Genetic explanations, discrimination and chronic illness: A qualitative study on hereditary haemochromatosis in Germany

2016 ◽  
Vol 12 (4) ◽  
pp. 308-319 ◽  
Author(s):  
Ulrike Manz
Keyword(s):  
Chronic Illness ◽  
Insurance Coverage ◽  
Genetic Diagnosis ◽  
Legal Protection ◽  
Genetic Mutation ◽  
Genetic Discrimination ◽  
Structured Interviews ◽  
Hereditary Haemochromatosis ◽  
Person Perspective ◽  
Self Help Groups

Objective The objective of this study is to explore the discriminatory impacts of genetic diagnosis for people living with the chronic illness of hereditary haemochromatosis in Germany. Methods Semi-structured interviews with 15 patients; all had tested positive for a genetic mutation associated with haemochromatosis and already displayed symptoms of the disease. Inductive approach, with interviews collaboratively interpreted by the research group in a vertical and horizontal analysis informed by a multi-person perspective. Results First, as the genetic diagnosis of the disease holds the promise of therapeutic intervention, the interviewees perceived it as leading to relief. Second, the interviewees felt stigmatized by their family members, they complained of social isolation and a lack of acknowledgement of their health problems. Third, they feared disadvantages for themselves or their children at their place of work, when buying insurance coverage, and when attempting to donate blood. Discussion The findings point to the need for an expanded view on genetic discrimination. Besides institutional discrimination, it appears necessary to systematically address interactional stigmatization and take anxieties and fears into account. Here we see starting points for providing essential support through specialist and self-help groups to those faced with the genetic diagnosis of haemochromatosis in addition to and beyond the legal protection against genetic discrimination that already exists.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

scholarly journals Health workers’ perspectives on informed consent for caesarean section in Southern Malawi

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Wouter Bakker ◽  
Siem Zethof ◽  
Felix Nansongole ◽  
Kelvin Kilowe ◽  
Jos van Roosmalen ◽  
...  
Keyword(s):  
Informed Consent ◽  
Caesarean Section ◽  
Health Workers ◽  
Group Discussion ◽  
Legal Protection ◽  
Analytical Framework ◽  
Structured Interviews ◽  
Middle Income ◽  
Partial Disclosure ◽  
Labour Pains

Abstract Objective Informed consent is a prerequisite for caesarean section, the commonest surgical procedure in low- and middle-income settings, but not always acquired to an appropriate extent. Exploring perceptions of health care workers may aid in improving clinical practice around informed consent. We aim to explore health workers’ beliefs and experiences related to principles and practice of informed consent. Methods Qualitative study conducted between January and June 2018 in a rural 150-bed mission hospital in Southern Malawi. Clinical observations, semi-structured interviews and a focus group discussion were used to collect data. Participants were 22 clinical officers, nurse-midwives and midwifery students involved in maternity care. Data were analysed to identify themes and construct an analytical framework. Results Definition and purpose of informed consent revolved around providing information, respecting women’s autonomy and achieving legal protection. Due to fear of blame and litigation, health workers preferred written consent. Written consent requires active participation by the consenting individual and was perceived to transfer liability to that person. A woman’s refusal to provide written informed consent may pose a dilemma for the health worker between doing good and respecting autonomy. To prevent such refusal, health workers said to only partially disclose surgical risks in order to minimize women's anxiety. Commonly perceived barriers to obtain a fully informed consent were labour pains, language barriers, women’s lack of education and their dependency on others to make decisions. Conclusions Health workers are familiar with the principles around informed consent and aware of its advantages, but fear of blame and litigation, partial disclosure of risks and barriers to communication hamper the process of obtaining informed consent. Findings can be used to develop interventions to improve the informed consent process.

scholarly journals FAMILY DEMENTIA CAREGIVERS’ EPIPHANIES AND CHANGES IN THEIR APPROACH TO CARING FOLLOWING THE VIRTUAL DEMENTIA TOUR

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S554-S554
Author(s):  
Candace C Harrington ◽  
Candace C Harrington
Keyword(s):  
Lived Experience ◽  
Family Caregiving ◽  
Phenomenological Study ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Health Indices ◽  
Person Perspective ◽  
Eye Opening

Abstract Previous interventional studies have failed to show long-term improvements in caregiver stress, health indices, burden, or delay in long-term care placement. The Virtual Dementia Tour® (VDT) provides a vicarious first-person perspective of symptoms related to dementia. This interpretative phenomenological study revealed family dementia caregivers’ perceptions of the VDT® and its impact on their perception of a person living with dementia. In-depth open semi-structured interviews were conducted with ten VDT® participants following a community event. Participants’ statements described a life-changing process with eye-opening epiphanies about the lived experience of dementia and served as a “call to action” to change their approach to caring. Innovative advances in family caregiving research are critical to support this valuable geriatric workforce. This original study provided new knowledge about the value of the VDT® to inform interventions that harness the unrecognized power of vicarious experiences like the VDT® for family dementia caregivers to improve long-term outcomes.

scholarly journals Parent-child collaboration in health care decision making: perspectives of young people with chronic illness

2021 ◽  
Author(s):  
Elana Jackson
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Chronic Illness ◽  
Young People ◽  
Organ Transplant ◽  
Chronic Illnesses ◽  
Structured Interviews ◽  
Health Care Decision ◽  
Role Of Parents ◽  
Care Decision

This study explores the perspectives of young people with chronic illness on their participation in health care discussions and decision making, with a specific focus on the role of parents in facilitating participation. Semi-structured interviews were conducted with 26 participants between the ages of 5 and 18. Participants were recruited from inpatient units at a pediatric hospital. A range of chronic illnesses were represented among members of the sample, including kidney failure, Crohn’s disease, organ transplant, and sickle cell anemia. Following data collection, a focused analysis was conducted of participants’ statements related to parent involvement in the health care decision making process. Salient themes that emerged from analysis of the data reveal a complex and bidirectional process in which young people and parents negotiate children’s participation in making decisions related to their health care. Based on the findings, a collaborative-contextual model of decision making is proposed.

The role of self-help groups in chronic illness management: A qualitative study

2003 ◽  
Vol 9 (3) ◽  
pp. 68 ◽  
Author(s):  
Kay Coppa ◽  
Frances M Boyle
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Health Care Professionals ◽  
Clinical Care ◽  
National Policy ◽  
Illness Management ◽  
Group Leaders ◽  
Self Help ◽  
South Wales ◽  
Self Help Groups

Self-help groups offer a unique form of support based on mutual understanding and the experiential knowledge of members. They constitute a potentially valuable resource for assisting people to manage chronic illness and its impacts. We conducted in-depth interviews with 15 members and the leaders of five chronic illness-related self-help groups in Newcastle, New South Wales. The focus was on small, voluntary groups with little or no external funding; agencies that are often overlooked in terms of their contribution to the health care system. Those interviewed readily identified benefits relating to quality of life, illness management, and interactions with health care professionals. Increased emotional and social support, access to an expanded information base, a better understanding of their illness, and a greater sense of confidence and control in relation to it seemed to enhance the capacity of members to engage in active self-management of their conditions. Along with such benefits, group leaders also highlighted some of the challenges faced by volunteers who run these agencies. Self-help groups are effective structures that can serve as an adjunct to clinical care and provide tangible benefits to their members. Further investigation and better recognition of these groups is warranted given their potential to assist those with chronic illness and to contribute to national policy objectives for chronic disease management such as those identified in the Sharing Health Care Initiative.

scholarly journals Making sense of chronic illness – a therapeutic approach

2011 ◽  
Vol 3 (2) ◽  
pp. 136 ◽  
Author(s):  
Sue Jacobi ◽  
Rod MacLeod
Keyword(s):  
Health Care ◽  
Chronic Illness ◽  
Health Care Professionals ◽  
Research Question ◽  
Phenomenological Approach ◽  
Therapeutic Strategies ◽  
Traumatic Experience ◽  
Structured Interviews ◽  
Making Sense ◽  
Made In

INTRODUCTION: A diagnosis of any chronic progressive illness can be a traumatic experience. People wonder how they will be able to cope and health care professionals wonder how they can help those so affected. The aim of the study was to discover how people find meaning when they are diagnosed with chronic illness. The research question asked is: How do people make sense of living with chronic progressive illness? METHOD: This is a qualitative study using a phenomenological approach to apply what is learned to developing therapeutic strategies in order to help those so diagnosed to find the meaning they need in order to live with resilience. Semi-structured interviews with seven people were held in order to determine how they cope with living with chronic progressive illness. The results were then used to develop some suggestions for health professionals as they seek to assist people with chronic progressive illness. FINDINGS: All participants displayed much resilience and determination which was found to emerge from three main themes: memory, hope and meaning. Memory was seen to be the link between all the themes. These are described and, arising out of the results of this study, some suggestions are made in order to assist in management. CONCLUSION: It is possible for health care professionals to assist patients to make sense of chronic illness by helping them to view their illness as part of life, and therefore a challenge to be faced rather than seeing life as dominated by illness. KEYWORDS: Chronic disease; resilience, psychological; narration; psychology, existential

Empowered or Entangled: Agency and Choice in Women’s Employment in India

2020 ◽  
Vol 27 (2) ◽  
pp. 98-116
Author(s):  
Neetha N.
Keyword(s):  
Women Workers ◽  
Legal Protection ◽  
Women's Employment ◽  
Economic Policies ◽  
Women’S Employment ◽  
Multiple Dimensions ◽  
Division Of Housework ◽  
History Of ◽  
Gender Based ◽  
Self Help Groups

In India, formation of NGO-aided self-help groups (SHGs) for production was seen as an important step to lift women out of economic marginalisation and, thus, for women’s empowerment. With changes in economic policies, challenges of wage employment for women were also assumed to have been addressed. In this context, this article, drawing from the history of empowerment discourse and its obsession with the economic aspect, examines women’s employment and its multiple dimensions The analysis provides insights into the gender-based inequalities in the labour market which are evident in the concentration of women workers in precariat, feminised jobs either under the control of the family or without any recognition or legal protection. The prevalence of regressive gendered ideologies in employment and in the division of housework raises critical questions about the understanding of the two critical pillars of empowerment, namely, choice and agency.

Rehabilitation From Addiction and Chronic Illnesses: A Comparative Analysis of the Narratives of Hungarian Patients

2020 ◽  
Vol 34 (1) ◽  
pp. 65-80
Author(s):  
Asztrik Kovács ◽  
Virág Mezőfi ◽  
V. Anna Gyarmathy ◽  
József Rácz
Keyword(s):  
Chronic Illness ◽  
Recovery Process ◽  
Active Role ◽  
Healthcare Services ◽  
Chronic Illnesses ◽  
Psychological Services ◽  
Structured Interviews ◽  
Rehabilitation Process ◽  
Psychological Phenomena ◽  
Patient Groups

BackgroundIn Hungary the psychological care provided during the rehabilitation of patients with chronic illnesses is insufficient. Patients with addiction, on the other hand, appear to make more use of psychological services. Narratives of patients recovering from addiction and patients with various chronic illnesses were examined in order to gain a better understanding of psychological phenomena during rehabilitation.MethodsSemi-structured interviews were carried out. Narrative and thematic analysis was used in order to determine the structure and characteristics of patients' narratives.ResultsThe narratives of patients recovering from addiction were found to be more structured and uniform; they identified with their illness and played an active role in their recovery. Patients with a chronic illness mainly recounted passive events and physical difficulties. Stigmatization was mentioned by both groups.Implications for practiceThe level of stigmatization experienced by patients with a chronic illness may be one of the reasons why they use healthcare services more frequently than patients with an addiction. The authors believe that teaching patients to provide good narratives about suffering from and recovering from chronic illnesses may aid them in the rehabilitation process. An adaptive mixture of different illnesses and addiction narratives might be beneficial in the recovery process of various patient groups.

scholarly journals Gambaran Tawakal Pada Mahasiswa Yang Memiliki Penyakit Kronis

2021 ◽  
Vol 1 (2) ◽  
pp. 94
Author(s):  
Munirah Zulkifli ◽  
Yulia Hairina ◽  
Mubarak Mubarak
Keyword(s):  
Chronic Illness ◽  
Environmental Factors ◽  
Data Collection ◽  
Chronic Diseases ◽  
Qualitative Approach ◽  
Structured Interviews ◽  
Surrounding Environment ◽  
Two Factors ◽  
Life Values

Chronic illness is a dangerous disease that cannot be underestimated or ignored because it can cause death at any time, but this is not an excuse for some students at UIN Antasari where they live and continue their studies well even though in their bodies there are diseases that can cause death, this is because they choose to trust God because with trust they can live their lives better. So from that researchers are interested in examining the description of the trust process in students who have chronic diseases at UIN Antasari Banjarmasin and factors that influence attitudes trust.  This research uses a qualitative approach. The subjects in this study were 3 students of UIN Antasari who had chronic diseases.  Data collection in this study was obtained using Anecdotal Record observation techniques, and semi-structured interviews.  After the data is collected, it is then analyzed with the stages of editing, coding, description and concluding data.  Based on the results of this study, there are several aspects that arise after making trust, such as the emergence of calm and peace, generate strength, Rida, and the emergence of hope. The factors that influence tawakal behavior are, first, the environmental factors which come from the surrounding environment such as family, friends and the community.  These two factors are experiences in which the fator is able to provide input for life values.

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