Symptoms are at the core of communication and dialogue whenever patients and professionals meet in health-care situations. Patients’ descriptions of their illness and distress are significant to professional understanding of their suffering. Sensations and perceptions have to be translated into and expressed in words. However, in a clinical setting, subjective symptom experience is filtered through a professional interpretation aimed at a specific diagnosis. As long as health-care professionals put disease manifestations in the foreground (a disease-centred approach) and patients’ own symptom experiences in the background, we must push for care models that ensure a more individualized perspective on symptoms and symptom management. We need strategies for integrating experiential knowledge into clinical practice.

Promoting a person-centred approach in which the patient’s experience comes first would seem to be self-evident. Such an approach, aimed at humanizing the healthcare system through new health-care models, was presented early on [1] and has been pursued internationally during recent decades under various designations: person-centredness [2,3], patient-centered care [4], personcentred nursing [5], and person-centred care [6]. Although frequently used in the literature, there are several interpretations of the concept person-centered care [7] and person-centredness [8]. However, the concept basically asserts that the patient is a person and that care provision efforts should be based on personal illness experiences.

In a person-centred approach to care, each person should be seen as completely unique, meaning that different persons with similar symptom experiences should not automatically be treated or supported in the same way. This leads to dilemmas in everyday health care, as the negotiation of symptoms, embedded in a singular search for a diagnosis, constitutes the central concern of most health-care encounters. In this paper, we discuss a person-centred care approach and explore the barriers to implementation of a symptom experience perspective in person-centred care.

The position of symptoms in person-centred care is paramount. Person-centred care planning starts with patient narratives of unique illness experiences. The health-care professional seeks to understand these experiences through the patient narratives, and should try to understand what the symptom or various symptoms mean to the patient. Symptoms often represent a call for help, reflecting not only physical aspects but also anxiety, depression, fear and expectations. The person’s subjective experience of illness has both cultural significance and a personal meaning regarding changes in health. This experience has to be conveyed and interpreted. Narrative communication, with its metaphors and foundation in human life, provides the basis for expressing vulnerability and fears [29-31]. Important issues of concern in person-centred care deal with the distress caused by symptoms as well as the desire for symptom relief. Eldh et al. [32] showed that patient participation was optimized when the patient was regarded as a person and when the patient’s symptom narratives were recognized by staff. In patients hospitalized for symptoms of worsening chronic heart failure, implementation of a person-centred approach shortened the hospital stay. Moreover, this effect was achieved without negative patient outcomes [33]. Furthermore, person-centred care is positively correlated with a constructive change of perspective [34] and job satisfaction [35].

The obstacles to implementation of person-centred care including a symptom experience perspective are manifold and multileveled. There is certainly no one-way road leading from pathology to perception and then to expression and verbalization of symptoms, and we still have inadequate knowledge of how words for symptoms relate to experience. The word is not the experience itself, but the mediation of experience made meaningful. The mystery of how physiological expression is transformed into verbal information is still unsolved. However, the social environment decides what is understood as a relevant symptom and determines the choice of words used to convey that symptom. Symptom interpretation solely aimed at diagnosis and optimal medical treatment of disease may be unsatisfactory. Illness is a subjective experience, and correlations between such an experience and malfunctioning internal organs do not always exist [14]. Symptoms often mean something over and above the diagnosis, which may cause discordance. Bodily impediments, complicated emotions or obstacles to daily activities may be experienced by patients as symptoms, i.e. as actual indications of disease, while professionals may interpret these markers differently [36]. The gap between the biomedical discourse and the patient’s experience may create misunderstandings, and therefore, a great deal of caution is needed to prevent communication distress. Recognizing this discrepancy, it would seem crucial to have a perspective that starts from a person’s own symptom experience, in this way complementing the biomedical perspective. Corwin et al. [37] pointed out the negative aspects of separating the determinants of a symptom from the phenomena associated with that symptom. Instead, specifying causal sequences and reciprocal relationships between bio-behavioural determinants and phenomena should guide future symptom research. Until we have understood the symptom interpretation process from the individual’s perspective and linked it to models of care, our skills in helping patients manage symptoms will be limited.

A shift from a “disease-centred” to a “person-centred” approach cannot just happen on its own. We need a model that provides a clarification of complexity and simultaneously reveals how the caring process fits in. Armstrong [26] argued that, in current studies and theories of symptom evaluation, the meaning of the symptom experience to patients is far from sufficiently considered. In an attempt to present a meaning-centred approach, she suggests using a multilevel model of symptoms (p. 603). This model includes the antecedents to and production, perception, expression and consequences of symptoms. The model also includes the meaning of symptoms and the existential meaning of symptom expression. Such a model might be a step forward in health-care professionals’ endeavours to grasp the complexity of patients’ symptom experience. However, the model is silent about the most essential step in the care process: the dialogue between the patient and the health-care professional, which always occurs in a specific context. This aspect could usefully be added to the model.

Personalized care actions for symptom relief should be developed through dialogue and shared decisions between the patient and the health-care professional, which runs contrary to standardized routine measures. Effective implementation of person-centred care is possible only when management follows through with plans, when care teams have confidence in their ability to meet goals for change, and when change fosters smooth operations in the daily routines of direct care providers [38]. A person-centred integrative diagnosis (PID) of the whole picture of a person’s health has been suggested [39]. The aim is not solely to provide a diagnosis, but also to portray the actual illness experiences and support fulfilment of the person’s health aspirations and personal needs. Person-centred care relies on a partnership between the patient and the health-care professional, which is initiated by the patient’s narrative [40].

There are many obstacles to overcome when implementing person-centred care that involves a symptom experience perspective: the diversity of understandings of symptoms in clinical settings, the current biomedical discourse and the incompleteness of symptom research. Therefore, establishing person-centred care in a healthcare unit requires commitment across the entire organization, that is, a movement towards a shared culture of person-centred care at all levels, not only temporary personal experiences of person-centredness on the part of staff [41,42].

Using the notion caring about symptoms, we advocate a person-centred care perspective based on a dialog between the patient and the health-care professional. This requires the development of professional skills that focus on listening to patient narratives that include the life situation and illness experiences and more specific knowledge about how symptom experiences can be individually expressed and interpreted. The health-care professional could strengthen a person’s involvement in treatment and care decisions by presenting a humble understanding of personal symptom experiences in addition to diagnostic techniques and procedures. Also, symptom relief strategies have to be considered in a dialogue with the patient. In contemporary health-care contexts, it is of vital importance to explore symptom experiences and symptom relief more fully. By upgrading the status of symptoms as providing valuable insights into a patient’s illness experience, health-care professionals may be able to meet the basic criteria for person-centred care.

Listening to symptom experiences may give insights into the personal meaning of illness as well as information about the potential activity and social restrictions caused by symptom distress. In this way, caring about symptoms will improve the prerequisites for establishing person-centred care planning. However, further empirical research and symptom concept analyses are needed that explore symptom experiences more fully.