Symptom recognition and health care seeking among immigrants and native Swedish patients with heart failure

Heart failure (HF) is a common condition contributing to significant morbidity and mortality in Western societies. It significantly impacts all aspects of quality of life, particularly impairing patients' mobility and performance of daily activities [1]. Cultural differences exist among patients with HF in the interpretation of symptoms, hospital readmission rates, and functional status [2]. The meaning that patients assign to symptoms and illness can have profound implications for their wellbeing. This meaning is influenced by culture, gender, experience, learning and beliefs, and all of these influence the individual's assessment of symptoms [3]. Family systems, coping styles, health beliefs, behaviours and practices influence the individual response to chronic illness, often as a consequence of a chronic disease. Illness represents culturally shaped reactions to a certain discomfort which mirrors the way an individual perceives, experiences and copes with it [4]. According to Helman, illness can be perceived as caused by external or internal factors, e.g., factors related to the individual, social relations, natural or supernatural forces [5]. While illness reflects a personal and social experience of health status represented as symptoms, disease is the physiological disturbance with signs as its clinical hallmarks [6]. Cultural differences exist also in explanations for the cause of disease and interpretation of symptoms. Such differences may lead to different responses to the illness, e.g., different self care measures or health care seeking behaviours.

Symptoms are sensations that signal a disturbance in normal body function to the individual. If these sensations cannot be recognised and management strategies are lacking, the individual's response may be inadequate or insufficient. Recognising the symptoms as a representation of unfamiliar sensations and responding adequately are behaviours which are related to the individual's cognitive, communicative or physical capabilities [3]. Previous studies on symptoms in HF have reported up to 45 different symptoms [7, 8]. In a recent study, the majority of the patients with HF (58 %) sought emergency care due to symptoms and 70% of those who delayed seeking care for exacerbation of HF explained that they chose to "wait and see". This strategy may imply a failure to recognise symptoms of deterioration [9] as medical attention is often sought only when acute or life-threatening symptoms occur [10, 11].

Appropriate health care seeking decisions are based on symptom recognition. Interpretation and evaluation of the experience requires sufficient knowledge about the disease, its treatment and recommended self care. This knowledge may also enable patients to develop their own management strategies. Several researchers have stated that the assessment and interpretation of sensations are influenced by gender, culture, beliefs, experience and learning [12‐14].

A review of the literature shows an under-representation of women, elderly, ethnic minorities and immigrants in clinical trials. The inclusion of these groups is imperative for determining appropriate treatments for these groups. However, studies involving HF patients have generally not focused on patient beliefs, perspectives and experiences of care and treatment, but rather on the pathophysiology of the condition, clinical factors or risk factors, epidemiology, readmissions and economical costs.

Immigrants in this study are defined as those who are born abroad, have another mother tongue than Swedish and are living in Sweden at present. This definition is in contrast to several other research designs which are built up on racial differences and classifies the participants as for example Asian, Black, White and Caucasian [15]. This kind of classification is not distinct enough because people classified as belonging to a racial or ethnical group might not necessary be immigrants and they may well have be living in the county for many generations. The word race is not an adequate variable in study of differences between human populations since the lion's share of human gene variation falls within, not between populations. Therefore the term "race" remains a social construct with social meaning and influence on the health without having any biological or genetic basis [16].

Due to an extensive global migration, Sweden has become a multicultural society with more than 120 different nationalities represented in the country. It is not known what patient perceptions or beliefs lead to beneficial decisions or response patterns in symptom interpretation among HF patients, especially immigrants. Moreover, knowledge about health care seeking patterns in immigrants is scarce.

The aim of this study was to explore and compare symptom recognition and health care seeking patterns among immigrants and native Swedes with HF.

Consistent with previous research [9], we found that symptoms were the main reason for patients to seek health care and that there was uncertainty in how to interpret the symptoms and its relation to HF, especially among immigrants. Prior research findings have also confirmed uncertainty about the condition and its management among patients with HF [19]. Patients with HF are often elderly with multiple chronic diseases, which may complicate symptom interpretation further. Symptom recognition in relation to different diseases may be even more aggravated in immigrants since their accessibility to sources of information about HF may be limited. Immigrant patients in this study were older than Swedes, which may indicate undiagnosed or documented cognitive impairments. Previous studies have confirmed a relationship between HF and cognitive impairment [20]. Such impairments could be a reason for misinterpretation of symptoms related to HF condition.

Underuse of interpreters and fewer follow-ups among immigrants after the first visit at the nurse-led HF clinic might explain their poor knowledge about the condition [21]. Other possible explanations are that communication between hospital health providers and those in primary care may be inadequate and possible shortcomings in handover and follow-up routines at discharge may lead to discontinuity in the care process. Assistive supportive systems in HF management should be continued after discharge and be linked to nurse-led outpatient HF clinics or primary care clinics to facilitate easy access to health care professionals. In order to reduce delays in seeking care, primary care HF clinics with fast access to health care and interpreters, e.g. by phone or internet could be one option. Such clinics would facilitate for immigrants with language deficiencies to seek immediate counselling and care without having to first overcome the barrier of booking an appointment by telephone.

Despite presence of worsening symptoms patients in both groups delayed seeking health care, which is in consistency with previous studies [22]. One reason for patient delays could be that the patients simply failed to identify early symptoms of worsening HF. Other factors contributing to intentional or non-intentional delays in health care seeking should be thoroughly explored among both patient groups. In this regard, characteristics such as the individual's world view, the causal explanation of the disease from a patient perspective, the meaning of illness and cultural metaphors assigned to the illness and disease should also be considered [23]. However, patients' perceptions of their role and ability to influence the condition and perform self-care are also important. Other patient-related factors, such as lack of knowledge about how the health care system works (how to enter and use it), can also explain delays in seeking health care. Moreover, lack of language skills or dependence on others to get to hospital or primary care clinics may contribute to delays [24]. Our patients may also have sought other informal care prior to hospital admissions [25].

Previous findings at a HF clinic showed that biological and medical aspects of care were more often recorded than psychosocial aspects [21], which may confirm that patient perspectives have lower priority, or possibly that our existing documentation system is focused on bio-physical aspects. Health care professionals often give higher priority to assessing signs and addressing disease management than to assessing illness experience and its meaning and consequences on patients' daily lives [17, 23]. In prioritising these aspects of care, the health care professionals may inadvertently ignore the individual patient's needs, resources and priorities. According to recommendations from the European Society of Cardiology for HF discharge planning, a multi-disciplinary team approach should be used to discuss with patients what early signs and symptoms indicate worsening of the condition. The team can also provide intensive education and counselling, conduct inpatient and outpatient follow-ups, and optimise medical therapy [17]. However, it appears that the last goal, i.e. optimising medical therapy, is the primary one at all care levels in HF management.

As in most other incurable and chronic conditions, an important treatment goal for HF is to improve the patient's quality of life. Consequently, preventive and health-promoting interventions should also be consigned higher priority in order to address informational needs and to assist patients in developing their own self management strategies based on their own beliefs and preferences.

Assessment of symptoms is considered to be important for the diagnosis and choice of treatment in HF [17]. Therefore it is important to assess patient's symptom experience. Some of our immigrant patients in the present study described their experience of illness as "feeling unwell" and gave this as one of the reasons for seeking acute care. This description may reflect language deficiencies or difficulties to find the right words and expressions among immigrants. Because it is a diffuse description, its significance is not easily interpreted by health care professionals. Nor is it precise enough to permit the assessment of its relevance to the management of the condition. Health care professionals need not only elicit the help of professional interpreters, but also thoroughly explore unclear descriptions of patients' illness experiences during the history taking session. Asking more attendant questions may enable health care professionals to better grasp the patient's experiences of burden and discomfort, especially when language barriers exist. This is imperative in order to gain an understanding of the impact of the illness experience on the patient's daily life so as to be able to provide patient-centred care related to the disease. It may also hinder misunderstandings about the symptoms of HF and thus enhance disease management and symptom relief.