Experiences of guilt and shame in patients with familial hypercholesterolemia: a qualitative interview study.

OBJECTIVE: To explore patients' experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. METHODS: We interviewed 40 men and women diagnosed with heterozygous familial hypercholesterolemia. Data were analyzed by systematic text condensation inspired by Giorgi's phenomenological method. RESULTS: Participants disclosed their condition as inherited and not caused by an unhealthy lifestyle. They could experience guilt or shame if they violated their own standards for dietary management, or if a cholesterol test was not favorable. Participants had experienced health professionals who they felt had a moralizing attitude when counseling on lifestyle and diets. One group took this as a sign of care. Another group conveyed experiences of being humiliated in consultations. CONCLUSION: Patients with familial hypercholesterolemia may experience guilt and shame related to how they manage their condition. Health professionals' counseling about lifestyle and diet may induce guilt and shame in patients. PRACTICE IMPLICATIONS: Health professionals should be sensitive to a patient's readiness for counseling in order to diminish the risk of unintentionally inducing guilt and shame in patients.

Perceived vulnerability to heart disease in patients with familial hypercholesterolemia: a qualitative interview study.

PURPOSE: Knowledge about the ways patients perceive their vulnerability to disease is important for communication with patients about risk and preventive health measures. This interview study aimed to explore how patients with a diagnosis of heterozygous familial hypercholesterolemia understand and perceive their vulnerability to coronary heart disease. METHODS: We did a qualitative study of 40 patients with familial hypercholesterolemia who were recruited through a lipid clinic in Norway. We elicited participants' perceptions about their vulnerability to heart disease in semistructured interviews. Data were analyzed by systematic text condensation inspired by Giorgi's phenomenological method. RESULTS: We found that participants negotiated a personal and dynamic sense of vulnerability to coronary heart disease that was grounded in notions of their genetic and inherited risk. Participants developed a sense of their vulnerability in a 2-step process. First, they consulted their family history to assess their genetic and inherited risk, and for many a certain age determined when they could expect to develop symptoms of coronary heart disease. Second, they negotiated a personal sense of vulnerability by comparing themselves with their family members. In these comparisons, they accounted for individual factors, such as sex, cholesterol levels, use of lipid-lowering medications, and lifestyle. Participants' personal sense of vulnerability to heart disease could shift dynamically as a result of changes in situational factors, such as cardiac events in the family, illness experiences, or becoming a parent. CONCLUSIONS: Patients with a diagnosis of familial hypercholesterolemia negotiate a personal and dynamic sense of vulnerability to coronary heart disease that is grounded in their understanding of their genetic and inherited risk. Doctors should elicit patients' understanding of their family history and their personal vulnerability to individualize clinical management.

The Zero-vision: potential side effects of communicating health perfection and zero risk.

Public health education may have harmful side effects: generate fear, give rise to healthism and contribute to a medical sorting society. To prevent these adverse reactions a new deal for public health communication is presented. It is commended to move public health from omnipotence to moderation, from life style to living conditions, from risk to the bright sides of health, from statistical clone to the holy individual. Furthermore public health communication ought to include uncertainty as authoritarian truth mongering erodes trust. The public health educator must convey compassion and dedication. Rational techno-info is not sufficient. The last golden rule for a new public health is to respect the people. The people are not an inferior mass subjected to basic instincts and irrational fears. Common sense and lay experiences may contribute to the wise management of risk. Therefore public health should develop a people-centered method, recognizing people's own values, perceptions and potentials for preventing disease and promoting health.

Medicine and the arts in the undergraduate medical curriculum at the University of Oslo Faculty of Medicine, Oslo, Norway.

The authors describe a course titled Medicine and the Arts, established in 1996, that is part of the first semester of the undergraduate medical curriculum at the University of Oslo Faculty of Medicine. The course comprises four two-hour seminars on literature, visual arts, architecture, and music. The core objectives of the course are to demonstrate how art can be a source of personal and professional development, and also how art represents a source of insight into patients' experiences and the social, cultural, and historical context of medical practice. The course emphasizes that art is ambiguous and many layered and that its interpretation requires sensitivity, engagement, imagination, and reflection. Fostering these skills is a major aim of the course because these skills are also essential for clinical competence and professional development. The course's seminars are integrated into the curriculum but are not compulsory. Although the topics covered by the course have not been explicitly addressed in the formal examination of students, there has been some discussion about doing so, which would be a signal that those topics are as important as others in the curriculum.

How do patients at risk portray candidates for coronary heart disease? A qualitative interview study.

OBJECTIVE: To explore how patients at risk of coronary heart disease (CHD) portray candidates for CHD. DESIGN: Qualitative interview study. SETTING: Norway. SUBJECTS: A total of 20 men and 20 women diagnosed with heterozygous familial hypercholesterolemia (FH) recruited through a lipid clinic. MAIN OUTCOME MEASURES: Participants' beliefs concerning persons who are considered candidates for CHD. RESULTS: Some participants believed that CHD could happen to anyone, while the majority conveyed detailed notions of persons they considered to be likely victims of CHD. Participants often portrayed the coronary candidate as someone who was different from themselves. Among those who mentioned gender, all presented the candidate as a man. Some women said that they had to reconcile themselves to being at risk of CHD, since they at first had conceived CHD as a man's disease. While some participants considered their notions to be valid for assessing people's risk of CHD, others questioned how valid their notions were. CONCLUSION: Doctors should recognize that distancing is a way patients cope with risk and that such a strategy may have psychological and moral reasons. When communicating about risk, doctors should take into account that patients' notions of risk may differ from medical notions of risk.

Women at risk of coronary heart disease experience barriers to diagnosis and treatment: a qualitative interview study.

OBJECTIVE: To explore barriers in the health service to diagnosis and treatment experienced by women at increased risk of coronary heart disease (CHD). DESIGN: Qualitative study using semi-structured interviews. SETTING: Norway. SUBJECTS: Twenty women diagnosed with heterozygous familial hypercholesterolemia (FH) recruited through a lipid clinic. RESULTS: Women reported three specific barriers related to diagnosis and treatment of CHD. They had to struggle to take a cholesterol test; they experienced that their risk was being downplayed by doctors; and that their symptoms of CHD were misinterpreted when they consulted doctors for evaluation and treatment. CONCLUSION: Stereotyping CHD as a man's disease may result in barriers to diagnosis and treatment for women. Doctors should ask the patient about the family history of CHD if a concern about heart disease is on the patient's agenda.

[Local and global environmental medicine--assessment by Norwegian physicians]. / Lokal og global miljømedisin--norske legers vurderinger.

BACKGROUND: Local and global environmental problems are challenges to our societies and affect human health. This study examines how Norwegian physicians see these problems. MATERIAL AND METHODS: 1,260 physicians were sent a questionnaire on their knowledge, attitudes and practice related to this subject. The response rate was 88%. RESULTS: Four out of five physicians believe that the global environmental situation is a big threat to human health. Three out of five believe that physicians have a particular responsibility to contribute to a sustainable environment and development and should set an example by a sustainable lifestyle. Half of them believe that the health service has a greater responsibility for sustainability than other institutions. Only one out of three report that environmentally acceptable conditions have been focused in their workplace. Half of the general practitioners and one third of the specialists are faced with environmental health problems every week. More than every third doctor experience patients with "environmental hypochondria". Physicians feel that they need to know more about environmental medicine; mass media is their most important source of information. INTERPRETATION: The study indicates that Norwegian physicians understand the significance of the environmental situation and recognise the responsibility of the profession. However, this knowledge is to a lesser extent translated into practice.