Experiences of guilt and shame in patients with familial hypercholesterolemia: A qualitative interview study
Introduction
The notion that the individual is responsible for their own health is wide-spread in western societies [1], and health messages such as to stop smoking, to eat a healthy diet, to drink moderate amounts of alcohol and to take regular exercise are well known in the public. A negative effect of health promotion may be that people feel anxiety, guilt or shame [2], [3]. Feelings of guilt and shame influence people's health-seeking behaviors and patients’ relationships with health professionals [4], [5]. Guilt and shame may have positive effects and motivate patients to health-related behaviors, but such emotions may also have a negative effect by causing anger, self-blame or depression [4]. Guilt and shame are related, but are usually distinguished as two separate emotions. Guilt is a self-directed anger over a violation of a norm, whereas shame is linked with anticipated or actual disapproval from others [4].
Research suggests that one may experience guilt or shame if being diagnosed with a potentially discrediting condition such as lung cancer or coronary heart disease [6], [7]. Patients may also recount their illness stories in ways that counter potential claims that a condition is self-inflicted or mismanaged [8], [9]. Individuals diagnosed with homozygous familial hypercholesterolemia may feel guilt if they fail to comply with treatment recommendations [10]. A better understanding of how patients with this condition experience guilt and shame may foster an improved clinical management.
Familial hypercholesterolemia is an inherited metabolic condition, which in its heterozygous form affects approximately 1 in 500 in most populations [11]. The homozygous form of the condition is rare, and in this paper “familial hypercholesterolemia” refers to the heterozygous form of the condition. The condition is caused by a mutation in the gene for the low-density-lipoprotein (LDL) receptor, and there is a 50% risk that offspring inherits the mutation. Familial hypercholesterolemia is characterized by raised plasma low-density-lipoprotein (LDL) cholesterol. A cumulative risk estimate suggests that, if the condition is untreated, 50% of men aged 50 years and 30% of women aged 60 years will develop coronary heart disease [11]. The condition is diagnosed on the basis of the patients’ family history of heart disease, clinical examination and laboratory tests. Medical treatment consists of LDL cholesterol lowering medication and a healthy diet with low amounts of saturated fat [11]. Current guidelines for clinical management also emphasize that patients should advised to be physically active and not to smoke [11].
We have conducted an interview study to understand more about how individuals with familial hypercholesterolemia perceive and manage their condition. We have previously used these data to explore how patients with a diagnosis of familial hypercholesterolemia experience the health service, and how they perceive their risk of heart disease [12], [13]. The aim of the present article is to explore patients’ experiences of guilt and shame with regard to how they manage familial hypercholesterolemia. Our point of departure as medical doctors is a commitment to a patient-centered approach in which health professionals should elicit patients’ agendas and health-related resources, and encourage patients to take an active role in the management of their condition [14], [15].
Section snippets
Participants
Our sampling strategy aimed at a sample of mainly young and asymptomatic participants with a diagnosis of familial hypercholesterolemia. We aimed for a sample with diversity regarding participants’ social background, family history of coronary heart disease, and time since diagnosis (Table 1). The first author interviewed 20 men (aged 14–53 years, average 31 years) and 20 women (aged 15–57 years, average 31 years). Seven participants had developed symptoms coronary heart disease such as
Overview
We found that participants disclosed their condition as “inherited” and not caused by an unhealthy lifestyle. They could experience guilt or shame if they had 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.
Validity and transferability
Participants in our study were recruited from a specialist clinic for metabolic lipid disorders and had a diagnosis of familial hypercholesterolemia. As they had contacted the health service, there was probably a selection towards people with a positive attitude to medical treatment in our sample.
We expected that people would talk about their experiences of guilt and shame in other terms. We have therefore interpreted some experiences of humiliation as instances where participants experienced
Acknowledgements
The research for this paper was supported by the Norwegian Research Council (grant number 130435/330), and with the aid of the EXTRA funds from the Norwegian Foundation for Health and Rehabilitation (grant number 2003/2/0239).
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