Illness identity: Capturing the influence of illness on the person’s sense of self

Abstract

Having a heart condition can pose major challenges to a person’s life, due to strict medication regimens, treatments, lifestyle changes and often the uncontrollable or life-threatening nature of the condition.1 Hence, patients with heart conditions may have trouble in dealing with their disease and incorporating it in their lives. There is a vast body of literature on how people deal with their disease or illness. A critical element in this matter is how people look at and experience their illness. To date, most studies in this context have focused on investigating illness perceptions. This relatively well-investigated concept pertains to the way patients perceive and think about their disease.2 Articles that have been published in the European Journal of Cardiovascular Nursing have indicated that illness perceptions are associated with: quality of life,3 performance of self-care,4 adherence,5 treatment-seeking behaviour,6 general healthcare use7 and attendance at cardiac rehabilitation programmes.8 Therefore, illness perceptions ought to be taken into account by nurses and allied healthcare professionals in the care of patients with acute and chronic cardiovascular conditions. Another particularly interesting concept in this context is illness identity.9 Illness identity can be defined as the degree to which a chronic health condition, such as a heart disease, is integrated into someone’s identity.9,10 As compared with illness perceptions, illness identity not only expresses how a person views the disease and the treatment, but also how much the disease has affected the way they think about themselves and the degree to which the illness became integrated into one’s sense of self.9 The overarching framework of illness identity comprises four different constructs: engulfment, rejection, acceptance and enrichment (see Figure 1).10 Engulfment indicates the degree to which patients feel that their disease dominates their identity.10,11 These patients completely define themselves in terms of their disease. Another construct pertaining to illness identity is rejection, which refers to the degree to which the disease is rejected as part of the patient’s identity and is seen as a threat or as unacceptable to the self.10,12 Patients with high rejection scores tend to refute their disease, which often results in suboptimal disease self-management and adherence.10,13 A more adaptive state of illness identity is acceptance, defined as the degree to which patients accept their disease as part of their identity aside from other self-defining identity assets, without being overwhelmed.10–12 Hence, these patients try to lead a life, as normal as possible, in which they do not deny having a disease. Finally, enrichment is the fourth illness identity state. Some people feel that their disease has changed their values and how they look on life and that their disease actually enabled them to grow as a person.10,14 Visualization of the four illness identity constructs The dot represents the heart disease and the circle represents identity. To assess these different illness identity states, the Illness Identity Questionnaire has been recently developed.10,15 This self-report questionnaire comprises 25 items that measure the four illness identities by statements such as ‘My illness dominates my life’ (i.e. engulfment), ‘I just avoid thinking about my illness’ (i.e. rejection), ‘I am able to place my illness in my life’ (i.e. acceptance) and ‘Because of my illness, I have become a stronger person’ (i.e. enrichment). For each statement, patients can indicate how much they agree, using a five-point Likert scale ranging from 1 (i.e. strongly disagree) to 5 (i.e. strongly agree).10 The questionnaire has been used for the first time and validated in patients with type 1 diabetes.10 In cardiac patients, the questionnaire has been employed in adults with congenital heart disease (CHD) and appeared to be reliable and valid in these patients.15 The latter study, performed in patients with CHD, showed that patients who felt engulfed were more likely to perceive depressive and anxiety symptoms and physical symptoms of the heart disease, and were more likely to be hospitalized, and to visit a medical specialist or a general practitioner.15,16 A possible explanation is that patients who experience a lot of symptoms or those who are in high need of medical follow-up feel more engulfed by the condition.15,16 However, it is also possible that patients who feel overwhelmed by their condition have a lower threshold to seek care.16 Since the latter study in patients with CHD used a cross-sectional research design, the directionality of these associations remains unknown. Patients with CHD who presented with high rejection scores were found to have more physical symptoms of the heart disease.15 This is not surprising since suboptimal adherence, which is often a result of illness rejection, could lead to a deterioration of the condition and could, subsequently, provoke symptoms. Again, an opposite directionality of effect is possible here as well, as the disease might be rejected from one’s sense of self as a defence mechanism when patients experience more symptoms.17 In recent analyses, rejection was found to be related to absenteeism at work or school in adults with CHD.18 Moreover, patients who accepted their illness as part of their identity were found to have fewer depressive and anxiety symptoms and fewer physical symptoms of their heart disease. It is believed that acceptance might enable patients to deal better with challenges of the disease, and that acceptance leads to better self-care behaviours.15,19 However, it could also be that experiencing few symptoms and pain might enhance acceptance, because the disease does not affect everyday functioning.15 Finally, patients who felt enriched were found to have more physical symptoms of their heart disease.15 This can be explained by the fact that individuals have to experience a substantial impact of their disease in order to be able to grow as a person.14 To the best of our knowledge, no other studies about illness identity have been published in the domain of cardiology so far. A qualitative study about illness disruption in heart transplant recipients has been published, indicating that a disruption between the identity and the body occurred frequently after a heart transplant.20 Illness disruption is related to illness identity, but does not cover the same constructs. Moreover, some studies have investigated the concept of illness acceptance in patients with cardiovascular conditions.21–24 However, these studies rather investigated the adaption to the disease and did not specifically focus on the integration of the cardiac condition into the identity. The first studies on illness identity in cardiac populations show that it may be an important concept for cardiovascular nursing.15,16 However, the body of empirical evidence is currently scarce and is limited to investigations performed in patients with CHD. Future research about illness identity and the impact of illness identity on functioning in patient populations with a diversity of cardiac conditions is needed. The scientific community should put studies focusing on illness identity on the research agenda, and researchers in cardiovascular nursing and allied professions may take up this interesting concept to improve our understanding of how a health condition, illness or disease is integrated in one’s sense of self and life.

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