Experiences of person-centred care - patients’ perceptions: qualitative study

There has been a shift in focus on patients’ roles in healthcare. Person-centred care suggests that both patients and health professionals form a partnership rather than patients being passive receivers of care. Patient care models have been broadly implemented and documented [1‐3] Furthermore, there are numerous studies on those features that can either hinder or facilitate the transition to such models. These can include the implementation process, staff involvement, resistance to new models and cultural dimensions [4]. However, few studies have tried to identify the potential effects of a new care model via patients’ perceptions [5, 6].

The public healthcare industry has proven to be difficult to change. Although some studies from public hospitals have revealed a surprisingly strong culture of flexibility, the system is long standing and based on long and strong traditions [7‐9]. Furthermore, several studies have revealed a high degree of inertia within several public healthcare organisations [10‐12]. Similar to many counties health systems, the Swedish healthcare system is characterised by a Beveridge-like system, one that is largely publicly funded, non-marketed and difficult to customise. It was designed to collectivise and standardise the level of service [13, 14]. This has proven to complicate efforts to tailor care to new care models that represent the modern imperative of patient involvement [15]. Authorities are calling for patients to play a greater role to improve their involvement in healthcare worldwide [16]. In the “Vienna Recommendations on Health Promoting Hospitals”, the World Health Organization [17] recognised the necessity of an active and participatory role for patients to improve both the quality and efficiency of the healthcare industry.

Several studies have been concerned with the need to involve patients in care processes. According to Longtin, the origin of patient involvement can be traced to movements in the 1960s that affirmed the consumer’s right to be informed, the right to choose and the right to be heard [1]. It has also been connected to ideas from New Public Management—ideals regarding market reforms and consumerism, that is, the freedom to choose one’s healthcare provider [18]. To enhance patient involvement, increase accessibility to the health industry and to strengthen the position of the patient, the Swedish government introduced a bill regarding changes in health and medical services [19, 20]. A key aim was to guarantee access to healthcare staff who possess several types of competences and skills to ensure continuity and involvement in the care process. It was believed that this move would ensure a holistic approach to the needs of the patient and therefore establish a continuum during the care process [19, 20].

However, the aim to implement a scheme to promote patient involvement is continually hindered by the paternalistic traditions within traditional healthcare systems [21]. Such behaviour relies entirely on the knowledge of experts and patients are regarded as passive recipients of care. They hold no legitimacy to be part of the imperatives of healthcare philosophies [22]. The replacement of out-dated care models with new models often stems from a desire to turn the patient from a passive receiver to an active key player [23]. The problem with the implementation of such schemes could perhaps be related to a lack of knowledge on how to involve patients in their care and the differences in preferences among people. Patients are more likely to trust their capacity to make decisions when they are thoroughly informed [24, 25]. Say et al. found that many factors influence patients’ preferences in clinical decision making. Such factors include demographic variables, gender, experience of illness and medical care, diagnosis and health status, type of decision they need to make and their relationship with health professionals. They also found that patient preferences change over time, related to patients obtaining greater experience and the stage of their illness [26]. In a population-based study, Levinson et al. found similar results—while most patients wanted to be offered choices, only half wanted to leave the final decision to their physician. They also found that patients up to the age of 45 years had an increasing interest in being active in their care plans; this rate then declines with age [27].

The analysis identified the key features of gPCC and produced six sub-categories. An overview of the results is presented in Table 2.

The main finding in the present study is that obvious effects stemming from the new care model were present in the data. However, its implementation was both fragmented and gradual; fragmented because not all staff appeared to be working according to the new care model (respondents perceived a difference between how individual staff members interacted with them) and gradual because the data indicated that staff who worked according to the person-centred care scheme did so in various degrees.

Traces of the implemented new care model were obvious; however, it was also clear that the implementation was not complete. The analysis gave the impression that a large portion of the staff understood and followed the instructions of the new care model to different degrees. Some conflicting data were also evident, indicating that some staff did not work according to the new care model at all. The analysis shows that patients felt listened to and that their own perceptions of the situation were noted. This was perceived positively and created trust. Patients felt secure in knowing that the healthcare professionals had listened to them and that their concerns had been taken seriously. Patients spontaneously expressed that they felt that the staff saw them as people and did not solely focus on their disease. It was also stated that not every ailment or aspect of a person’s illness needed to be addressed or resolved for open listening to be perceived as a positive encounter. To have the opportunity to express one’s thoughts and feelings and be listened to was, in many cases, considered to be the most important aspect. The fact that staff had a wider understanding of the patient’s situation provided peace of mind. In cases where the patient was already aware of his or her disease, it meant a lot to be taken seriously and to receive the help they sought. This confirmed a sense of personal responsibility for his/her situation and seemed to be a basis for a continuing relationship with their healthcare providers.

Two of the features described in the new care model, initiating the partnership and operating the partnership, were richer in data than the last feature, safeguarding the partnership. This may be explained by the results found in a parallel study on management strategies to implement person-centred care [33]. In that study, it was found that there was a lack of common strategies, each manager had their own thoughts and understanding of how to implement and operate the model. One of the aspects of person-centred care that all the managers agreed on, was that by understanding the patients better, care could be more effective and that money could be saved [33]. Many patients had previous care experiences and they sometimes compared these experiences with on-going care. They pointed out how both nurses and physicians showed more interest in them as persons and they did not just focus on the disease as they had done on previous occasions. They perceived this change as a positive addition that did not reduce the exiting level of medical care.

The interviews also revealed that respondents had different reactions to the new care. Some respondents felt that they were included and able to participate in their care, and they approved of the regime. In contrast, others felt they were not included but did not expect it. Of those respondents who were not included in their care, some did not mind and considered it natural to leave all decisions to the staff. They saw the staff as experts who were supposed to have that role; this is a common perception found in other studies [27]. Other respondents did not see it that way at all: they really wanted to participate although some felt excluded and not allowed to do so. Several respondents had experiences where the staff talked to each other over their heads, and in some cases staff discussed matters with the respondents’ relatives instead, which made the respondents feel belittled. Thus, it may not be that patients do not want to participate in their care but rather they have not been appropriately invited to do so. Eldh et al. found that if the discussion emanated from a patient perspective, patients were more likely to participate [25]. Furthermore, Say et al. concluded that health professionals should be more sensitive to patients as people to provide person-centred care [26]. In some cases, the respondents expressed uncertainty about openly talking about their situation and felt that their personal experiences were of no relevance to their medical situation. Great respect for physicians made it difficult to express feelings and personal thoughts. When such thoughts had been encouraged and their value affirmed, respondents rated the discussions as being very positive and considered it an important experience during their hospital stay.

The patient as a partner, as described in the theoretical paper by Ekman et al. was never intended to make medical decisions; instead, they can contribute to their care by being experts about themselves and by jointly guiding the care towards personally set goals [2]. However, some respondents were unclear about their role and how they could participate. This may have been unclear because in the previous study on the managers in this specific department, it was found they had different views on this issue, thus giving mixed messages [33]. However, one way to engage and involve patients is to start from a personal perspective, discussing their circumstances, pointing out factors influencing the outcome in connection to their health plan. Thus, respondents are drawn into the planning process and it becomes natural for them to participate.

The implementation of person-centred care clearly occurred to a large degree, despite some patients appearing not to have been exposed at all to the gPCC. These findings indicate that although some patients were not very interested in participating and playing an active role in their own care, this response might be because of a lack of understanding of how to invite them and to increase their confidence. Because of the existing paternalistic healthcare system in Sweden, it will require strong pedagogical skills to introduce new regimes where patients are seen as partners.