Tenacious assumptions of person-centred care? Exploring
tensions and variations in practice
Öncel Naldemirci
University of Gothenburg, Sweden
Doris Lydahl
University of Gothenburg, Sweden
Nicky Britten
University of Exeter, UK
Mark Elam
University of Gothenburg, Sweden
Lucy Moore
University of Exeter, UK
Axel Wolf
University of Gothenburg, Sweden
Abstract
In recent decades the “tenacious assumptions” of biomedicine regarding the neutrality and
universality of its knowledge claims have been significantly challenged by the growth of new
collaborative and patient-focused models of healthcare delivery. In this paper we discuss and
critically reflect upon one such alternative healthcare model developed at the University of
Gothenburg Centre for Person-Centred Care (GPCC) in Sweden. This centre uses three clinical
routines of narrative, partnership and documentation to provide healthcare to people recognized
as unique individuals rather than patients. Person-centred care in Gothenburg and more broadly is
based on the assumption that a person is independently capable of reasoning and verbal
1
expression and willing to provide clear and genuine narratives and cooperate with healthcare
professionals. However, we argue that by emphasising individual capabilities of reasoning and
verbal expression, an unnecessarily limited conception of personhood risks being imposed on
these routines. Drawing upon semi-structured interviews with researchers in three very different
GPCC research projects – about healthy ageing in migrant communities, neurogenic
communication disorders, and psychosis – we highlight that how persons are recognized as
unique and capable varies significantly in practice across different healthcare settings. Thus, we
assert that PCC’s own potentially tenacious assumptions about the attributes of personhood risk
distracting attention away from the variety of creative ways that professionals and persons
promisingly find for translating the ideal of PCC into practice.
Keywords: Person-centred care, patient narrative, partnership, person
Introduction
Almost three decades ago, Deborah R. Gordon argued how the blindness of biomedicine to its
own social practices and “cultural scaffolding” has continually undergirded its belief in the
neutrality and universality of its knowledge claims (1988: 20). As these “tenacious assumptions”
of neutrality and universality have become embodied in professional practice and being, so the
introduction of healthcare reforms recognizing other forms of knowledge and understanding has
become harder to achieve (1988: 21). However, in the face of a mounting chorus of criticism
problematizing biomedicine’s “objectivism”, “dehumanizing procedures” and “disease-focus”; so
a host of more holistic and patient-focused healthcare models have progressively won growing
favour and support (Institute of Medicine (U.S.) Committee on Quality of Health Care in
America, 2001; Mead and Bower, 2000; Stewart, 2003). Person-centred care (PCC) is such a
2
model which seeks to reconcile biomedical advances with humanism by recognizing and caring
for patients as persons.
In this paper, we focus on three research projects developed at University of Gothenburg Centre
of Person-centred Care (GPCC) in Sweden. We aim to explore how new models of care can risk
compromising themselves by acting to replace the tenacious assumptions of biomedicine with
similar assumptions of their own. In particular, we will discuss how a guiding assumption of
individual capabilities of verbal expression risks limiting the perception of personhood guiding
the development and delivery of PCC. In this way we wish to claim that the introduction of a new
model of healthcare should not be seen as necessitating the adoption of a uniform set of practices
faithfully representing underlying principles. It should rather be accepted as remaining dependent
upon the inventiveness of health professionals and patient-persons alike in collaboratively
adapting new practices to the particular circumstances of care at hand.
The structure of the papers is as follows. First, we shall briefly introduce PCC and trace how an
assumption of individual capabilities of reasoning and verbal expression has become influential
in conceptions of personhood in person-centred models of care. Secondly, we will describe the
GPCC model and the practices, referred to as “routines”. Thereafter, we shall introduce our
purposeful choice of three research projects at GPCC and present our methods of data collection
and analysis. Then, we shall describe and discuss adaptations of routines in these three research
projects.
Person-Centred Care
Person-centred care is anchored in a history of humanizing medicine and holistic care stretching
back to the 1960s, which has been designated under different labels and approaches (Hughes et
al., 2008) such as person-centeredness (Leplege et al., 2007), client-centred care (Rogers, 1961),
3
patient-centred care (Mead and Bower, 2000; Stewart, 2001), person-centred nursing
(McCormack and McCance, 2006), and person-centred caring (Edvardsson et al., 2008b). All
these “-centred” approaches have responded to the impersonal and disease-focused approach of
biomedicine that largely ignores how patients experience, understand and express their illness in
the delivery of healthcare (Kleinman, 1988; Mattingly, 1998; Charon, 2006). Client-centred and
patient-centred care have sought to enhance communication between healthcare professionals and
patients as well as improve diagnosis, treatment and care practices by focusing on the clients’ and
patients’ individual needs and resources.
Even though there is not a commonly agreed definition of person-centred care and the terms
“patient,” “client”, and “person” are often used interchangeably (Sidani and Fox, 2014), personcentred care is arguably more concerned to go beyond seeing people as “individuals,” “clients” or
“patients” and
take into account the whole person. The difference between “patient” and
“person” may seem a nuance, but it has been argued that it underlines a change from a focus on
patient’s medical condition and symptoms to a more holistic approach including a person’s
preferences, wellbeing and wider social and cultural background (Health Foundation, 2014;
Britten et al., 2016). In other words, patient and client- centred care imply an individualized
therapeutic relationship, whereas person-centred care attempts to build upon a more interpersonal
relationship.
In some models of PCC, a person seeking professional care is expected and encouraged to share
their experiences, provide an account of their symptoms and goals, and participate in decisionmaking processes and care plans (Ekman et al., 2011, 2015; McCormack, 2004). In this way a
shift is envisioned from a paternalistic biomedical tradition where healthcare experts are
4
omniscient decision-makers to a more humanistic, dialogic and collaborative relationship where
lay people in need of medical care are still recognized as resourceful and capable.
The Person in Person-Centred Care: Rogers and Kitwood
The complex origins of person-centred care make it difficult for PCC “to become a consistent
unified and comprehensive concept” (Leplege et al., 2007: 1564). However, there have been
several attempts to trace the genealogy of PCC. For instance, McCormack et al. (2012) identify
two important antecedents of PCC in the writings of Carl Rogers and Tom Kitwood and we argue
that these are also crucial for understanding the assumptions about the person in PCC.
Carl Rogers (1961) proposed client-centred care in the early 1940s emphasising the qualities,
resources and potentials that individuals possess. As a psychologist, he contested the omniscience
and expertise of the therapist. He suggested that given appropriate guidance and a facilitating
environment, individuals should be able to find ways of recuperating their autonomy and wellbeing. In Rogers’ view, human beings are positive, forward-moving, constructive, realistic and
trustworthy (1957: 200). In his optimistic view of human nature, a person’s “inner resources” are
valuable for the therapeutic relationship (Thorne, 2003). Even though this approach aims to
deconstruct the directive and interpretative role of the clinician, it has been criticized for being
too individualistic and undermining the importance of the person as embedded in other social and
interpersonal relations. The view of the client as an individual continues to be discussed and
contested in models of person- (McCormack, 2004), relation- (Nolan et al., 2001) or familycentred care (Rosenbaum et al., 1998), which situate the person in a web of relations rather than
as an individual. Moreover, whether and how a person can express and make use of their
capabilities and resources in a clinical encounter is not to be taken for granted. In this respect, the
assumed capability of Rogers’ clients also resonates with the prevailing idea of the person we
5
typically find in models of PCC (Harding et al., 2015). Here, we do not wish to discount or
ignore the resources that a person may have. Rather, we want to point to the fact that persons may
not always be willing or able to deploy their resources; this may require the cultivation of a longstanding relationship based on trust, mutual understanding and cooperation between healthcare
professionals and patients.
A second antecedent of recent models of PCC is Tom Kitwood’s research in the field of dementia
pointing to the significance of seeing those with dementia as persons still participating in
interpersonal relationships. Kitwood’s (1997) definition of the person, informed by the
philosophies of Martin Buber (1970) and Carl Rogers (1961) goes beyond the vision of a person
endowed with rational reflective capabilities. Kitwood defines personhood as “a standing or
status that is bestowed upon one human being, in the context of relationship and social being”
(1997:8). His contribution places emphasis on personhood as developed and sustained in a
context. Rather than looking for “inner resources” of the person or the “congruence” between
“what the person is undergoing, experiencing, and communicating” (1997:16), Kitwood’s
contribution is to see the importance of interpersonal and embodied relations when defining the
person. Despite criticisms of Kitwood’s ideas (cf. Dewing, 2008) and methods (Adams, 1996),
his work and ways of understanding the person continue to shape models of PCC, especially in
the field of dementia (Edvardsson, 2008).
A recent international report summarized PCC as care practices rooted in a philosophy of people
as “purposeful, thinking, feeling, emotional, reflective, relational, responsive to meaning”
(Cassell, 2010). Similarly in Rogers’ client-centred approach (1951), we find one underlying
premise imported into recent models of PCC that persons can be reflective and communicative
about their wishes, emotions, and resources. This can be seen as a naive assumption that
6
underestimates the complex and sometimes established relationship between healthcare
professionals and patients. Persons can suppress their emotions and goals in circumstances where
their previous experiences have been shaped by a particular paternalist relationship that has
disregarded their personal experiences in favour of signs or other standardized procedures (for a
discussion of symptoms in PCC, see Brink and Skott, 2013).
A further assumption is that, based on a person’s rational and reflective judgement, they may be
willing to participate in PCC despite having other priorities or divergent ideas from professional
caregivers. This idea of active participation in care may turn into “a form of enforced
empowerment in which individuals are given responsibility for things they sometimes may not
want to be responsible for” (Cribb and Gewirtz, 2012: 510). This is also relevant for goal setting
between healthcare professionals and patients where developing mutual understanding and trust
is required.
Another critique of the imagined person in PCC is that it assumes that a person can verbally
communicate their own story in a coherent, structured and trustworthy fashion. In this way the
“patient perspective” and their reported illness experience are seen as complementary to
biomedical knowledge of disease. However, this has been questioned by researchers like Pols
(2005) for assuming that patients perceive themselves as individuals and that they are able to
verbally communicate their experience and perception. Rather, Pols suggests involving patients
as subjects in research and taking performativity as a starting point. Focusing on situations and
activities, Pols argues that patients “enact appreciations, making known what they like or dislike
by verbal or non-verbal means in a given material environment, in situations that are co-produced
by others” (2005:203). This points to the importance of patient positions rather than perspectives
7
and how the inability of a patient to speak does not necessarily mean that he or she is unable to
provide a narrative (Goodwin, 2004).
Developing person-centred care: Three ‘routines’ at GPCC
Despite these assumptions about the person and the importance of attending to the whole person,
the implementation of PCC remains tentative in the mainstream (Harding et al., 2015). In 2010,
GPCC was established as a Swedish research centre for the study of PCC in long-term illnesses.
Drawing upon the philosophy of personalism, GPCC defines PCC as care that “highlights the
importance of knowing the person behind the patient – as a human being with reason, will,
feelings, and needs – in order to engage the person as an active partner in his/her care and
treatment” (Ekman et al., 2011:249). This definition is operationalised through specific practices,
which GPCC calls “routines” so that they can be embedded and sustained in everyday clinical
practice. The model of PCC developed at GPCC was pioneered in a project in coronary care and
led to the formulation of three routines concerning the patient narrative, partnership and
documentation. The first routine involves collecting the patient narrative and this “constitutes the
starting point for PCC and lays the ground for partnership in care” (Ekman et al., 2011:250). The
narrative is seen as the patient’s personal account of their illness, its symptoms, its impact on
their everyday life as well as an account of their beliefs, feelings, needs, capabilities, goals and
experiences.
The second routine concerns the use of narrative communication to establish a partnership
between patient and caregiver, enabling the sharing of knowledge and experience, providing “a
good basis for discussing and planning care and treatment with the patient” (Ekman et al.,
2011:250). The third routine concerns documentation of the patient narrative as well as the
history of partnership and patient involvement in care and treatment decision-making. Moving
8
beyond the initial project in coronary care these three routines have been adopted by
professionals willing to follow and implement this model of PCC in different contexts and with
different populations (Moore et al., forthcoming). In other words, these three routines have served
as a blueprint for the implementation of PCC across different healthcare settings.
However, as described above, these routines can only serve to initiate, integrate and safeguard the
GPCC model if persons share their narratives with professionals and agree to take part in decision
making. In other words, the GPCC model is based on the assumption that a person is capable of
reasoning and verbal expression and willing to provide clear and genuine narratives and
cooperate with healthcare professionals. This is conceived as the foundation for an emancipatory
and empowering approach to the relationship between the healthcare professional and the patient,
enhancing collaboration and enabling respect for the dignity and uniqueness of the person.
However, there needs to be a continuous critical analysis of what happens in the situations where
persons are not able or willing to cooperate and communicate.
After briefly presenting our research methods in the next section, we will turn our attention to
how the ruling definition of the person in the GPCC model is challenged in light of three different
projects that attempt to develop PCC. While the first project questions the elicitation of
narratives, the second project investigates how narratives could be used by healthcare
professionals and how persons’ capabilities are dependent on the context. The third project
suggests how seeing a person as a unique individual may undermine the relevance of social and
interpersonal relations.
9
Methods
Data collection
The arguments presented in this article are based on qualitative data collected as part of a larger
study that aims to investigate the ways of defining and implementing person-centred care in
various healthcare and community contexts. One of the authors, who is also a member of GPCC,
facilitated recruitment to the study by circulating information to potential interviewees. Others in
the research team then contacted interviewees and carried out interviews and analysis.
The research material consists of 17 semi-structured interviews with 18 researchers (one
interview was conducted with two researchers), all of whom are healthcare professionals working
in seven GPCC projects chosen to represent different contexts of PCC in various stages of
development (Britten et al., 2016; Moore et al., forthcoming). The projects are: acute coronary
syndrome, irritable bowel syndrome, osteopathic fractures, patient participation in hypertension
treatment, healthy ageing in migrant communities, neurogenic communication disorders, and
psychosis. Out of the 17 interviews with professionals for the main study, 8 interviews from 3
projects were purposefully selected to support the analysis in this paper. These interviews reflect
tensions and variations in practice of the aforementioned routines especially due to the
characteristics of the intervention population. The interviews were carried out in Swedish or
English depending upon the stated preference of the interviewee. Most interviews took place at
the interviewee’s workplace out of respect for their tight schedules, but four interviews were
conducted at the Department of Sociology, University of Gothenburg. The interviewers used a
specific topic guide covering the definition of PCC, its routines, and similarities and differences
compared to other healthcare approaches such as evidence-based medicine and patient-centred
care. The interviews lasted for about an hour, and the range was 45-78 minutes. All interviews
were transcribed verbatim, with interviews in Swedish then translated into English.
10
Data analysis
The data set was analysed using thematic analysis, comparing similarities and differences within
and between different PCC research projects. Firstly, we engaged in a naive reading of the
transcripts and highlighted tensions in interviewees’ accounts regarding the operationalisation of
the three routines – namely collecting the patient’s narrative, establishing partnership and
documenting this partnership – developed by GPCC. Consequently we set out to study the
operational aspects of PCC and what the stated aims of PCC meant in practice. Thereafter, we
concentrated our analysis on projects where the intervention population posed clear difficulties
for the routines and the vision of personhood underlying them. This led to a focus on three
particular projects concerning neurogenic communication disorders, psychosis and healthy
ageing in migrant communities. Researchers in these projects questioned the assumptions of i)
verbal expression; ii) partnership developed through narrative elicitation and iii) the oscillation
between the person as unique and the person as representative of a larger community.
After the adoption of this focus, the first two authors carefully read and coded the transcripts. We
did not use a specific theoretical framework when coding the material, but rather generated codes
from the data. The central codes were: verbal expression, patient narrative, partnership,
capabilities, authenticity, goals, and uniqueness.
Results
Neurogenic communication disorders: Eliciting narratives from patients who are unable to speak
One GPCC project addresses communication disorders arising subsequent to stroke or other
kinds of neurological diseases affecting communicative abilities. The project is conducted in
nursing homes and directed towards dyads, consisting of one patient, with some kind of
communication disorder, and one healthcare professional.
11
Patients with communication disorders are often excluded from traditional biomedical research
since they are not able to participate in standard research procedures such as interviews or
questionnaires. However, this PCC project wants to find ways of attending to the person behind
the patient even when they cannot understand or express themselves in a conventional fashion.
To do so the project aims to train and supervise healthcare professionals in supported
communication. Yet, as GPCC’s version of PCC builds on verbal narrative elicitation,
researchers in this project have had to find ways to grapple and tinker with the notion of narrative
in order to adapt it to the realities of care they face.
Rather than seeing narrative elicitation as straightforward verbal communication, eliciting a
narrative is perceived as a multi-faceted interaction between the healthcare professional and the
person in this project. Thus, facilitating narrative elicitation is not only seen to mean talking to
the person but also carefully observing and providing the person with tools through which they
can express themselves in non-verbal ways. Items such as pictures, calendars or paper and pen
can therefore become vital to narrative elicitation. One of the researchers explained that
supportive ways of facilitating communication
…can be basic strategies. You have to look at your patient; you have to listen to the
patient. And also to give, to give examples of what you can do. If the person can’t tell me
what’s wrong, maybe the person can point or maybe draw something, or show with
movements. (…) It can be difficult to think about other strategies. Because you’re so focused
on speech that you don’t even think about using paper and pen, for example.
Another difficulty facing this project is the assumption that the patient narrative corresponds to
the authentic and individual testimony of a unique person. The idea is that by letting the patient
12
tell their story, one will get a glimpse of the genuine authentic person. However, with patients
with communication disorder the narrative is often mediated by a third person such as a family
member who works as an interpreter for the person. Therefore, this project calls in a sense for a
broadening of the definition of narrative, so that narrative can be seen as jointly constructed by
the patient, caregiver, family members and symbolic and material aids (c.f. Moser, 2010; Hydén
and Antelius, 2011; Goodwin, 2004). Consultations that include more than two participants have
been discussed in healthcare research as “joint interviews”. Sakellariou et al. (2013) argue that
joint interviews can offer important insights into the shared experience and co-construction of the
meaning of an illness, yet they also warn against the risk of misusing joint interviews especially
in cases of patient vulnerability.
At the same time, a more traditional view of the patient narrative is still valued in this project.
From this perspective, the narrative is seen as consisting of aspects that are unique for each
person and if the narrative is co-constructed by the caregiver and/or family members, a risk arises
of missing something that is essential to the person. This risk is described by one of the
researchers as follows:
If we talk about the narrative it is hard to be absolutely a hundred percent sure that you
understand the person’s wishes and the will of that person. And also that can be hard with
significant others (…) maybe the patient or if we say it’s a man with aphasia, maybe his will
is different from his wife’s. And maybe she … thinks that she knows what her husband
wants, but she doesn’t. So it can be a challenge to make sure, even if you can use the
significant other as a resource in, in finding out the narrative. (...) And also I think that can be
the same thing with, like staff at nursing homes. Because they can have an idea about these
people. But maybe it’s not correct.
13
The focus on the narrative as a person’s unique account leads to uncertainty about the validity of
the narrative. Mediation by a third person can be considered to alter the genuine narrative of the
person compared to one she might articulate herself. The researchers in the project are therefore
faced with a paradox: the context and participants in the project necessitate a broadened
definition of narrative elicitation and the patient narrative on the one hand while PCC privileges
the person’s own personal testimony on the other.
A final challenge relates to the connection between the patient narrative and partnership.
According to the GPCC model the patient narrative is considered to initiate a partnership between
patient and healthcare professional. Despite this assumed chronology of routines, this project
entails early collaboration or partnership as a prerequisite for narrative elicitation. Rather than
starting with the narrative, one researcher contends that:
The prerequisite for these narratives is that there is a partnership where the staff – the care
provider – can be a resource for the patient or resident (...) as I believe we’ve gone on about
in various contexts within GPCC, but conversations always mean collaboration and
partnership, whatever the situation. When you and I are talking we adapt to each other, you
reword things and I say “no, I don’t understand” and so on. So that’s always collaboration...
and, in that sense, a partnership.
Psychosis: Patient narrative authenticity questioned
Another GPCC project concerns hospital-based psychosis care. Person-centeredness in
psychiatric settings might differ from PCC in other settings (Edvardsson et al., 2008a).
Gabrielsson et al. (2014) point to PCC’s close connection to recovery in this environment but
also to how PCC in psychiatric care may offer alternatives to coercion. The GPCC project aims at
developing an educational intervention for staff working on in-patient psychiatric wards and
14
exploring patients’ own goals and needs through the initiation of PCC plans. These care-plans are
being developed together with patients and social resource groups (i.e. next-of-kin and other
members of their social networks).
Arguably, the project challenges the initial definition of PCC in three different ways. In the first
instance, it raises questions about the degree of authenticity that can be ascribed to the patient
narrative. One researcher invoked her previous experience in psychiatric care and underscored
the difficulty of determining whether the person is telling the truth:
...sometimes it’s difficult, I mean, I had a patient who came to me and he said, we had given
him permission to go out, to go to his house for two hours, and he came back after four
hours. And we said ‘You had two hours. And now you have restrictions because you could
not follow. We told you two hours and you came after four hours.’ And he said ‘It was not
my fault, (…) because in my house, when I was eating a potato got stuck in my throat and I
could not breathe and I called the ambulance, and the ambulance brought me and they, and
now I’m discharged from the emergency, and [laughs] a potato was stuck in my throat.’ And
we did not believe him. We said that it was just a story he made up, the potato got stuck and
he almost died and all of these things, you know. And then he got restrictions that he cannot
go out more until he follows the restrictions, so we see that he follows them. And I said ‘OK,
but if he had actually been to the acute ward, it should be on the record’, and I looked it up
and yes, he was there. He had actually had a potato stuck in his throat and all he had said was
true.
Experienced clinicians in psychiatric care know that patient narratives are not always
immediately transparent representations and accounts but that they need to be submitted to a
continuous assessment. This is not to say that these narratives are never plausible and coherent.
15
As the story related, the patient narrative is not something to be immediately believed or
dismissed, but rather to be accepted as the basis for a relationship between the healthcare
professional and the patient, where continuous narrative generation and assessment takes place.
Similarly, people admitted with psychotic conditions might not always have insight into their
illness or be alert enough to express what kind of care they require. In severe cases,
hallucinations and crises might even prevent patients from telling their narratives. Therefore, the
second challenge for PCC in psychiatric care relates to the first. Prior collaboration and
consultation and sometimes even an intervention (i.e. antipsychotic medication) can be necessary
before the patient narrative can be elicited. Another researcher in the same project underlined the
not uncommon difficulties of initiating a dialogue with an acutely admitted patient:
I think, for example, if you look at how this intervention has been implemented in some of
the somatic care wards, it’s been like a goal to, within 24 hours of admittance to the hospital
the patient should be interviewed. And then you write up a care plan together with the
patient. Here this time might have to be stretched a bit because if a person arrives to the
clinic with police transport and is placed in involuntary care, the first thing to do is try to get
a grip of the symptoms, and it’s not until that is underway that it’s actually going to be
possible to have this interview with the patient to create the care plan. (...) So it might be that
we’re not going to be able to do this within 24 hours, it might take a little bit longer. ‘Cause
once the medication starts to work then it’s gonna be much easier to talk and to share
[laughs], to share worlds, if you like!
Patients in crisis may have problems partaking in an interview and the formulation of a care plan.
Here, the medical intervention appears as a way of aligning the world of the patient and that of
the healthcare professional. This corresponds well with McCormack and McCance’s (2010)
contention that everyone has an innate capacity for both authenticity and partnership but that
16
healthcare professionals in times of vulnerability may have to step forward or “‘leap ahead’ of the
other in order to facilitate the others authenticity” (McCormack and McCance, 2010:16).
A key premise of PCC in the broader literature is that all persons have capabilities and resources.
During analysis we noted that interviewees articulated the use of narrative and documentation as
a way of recording the person’s resources and capabilities and creating a care plan. This is
reminiscent of Roger’s client-centred approach in the sense that the clinician ought to guide
clients to be aware of their potential strengths. This derives from a particular understanding of
human beings in interpersonal relations as always capable of actively changing the content and
forms of these relations and as having important contributions to make to a care plan. This view
seeks to empower patients by refusing to see them as passive care receivers and by encouraging
them to participate in care plans drawing upon their resources. However, a third difficulty
confronting the introduction of PCC in the context of psychiatric care is that capability does not
refer to steady and unchanging resources. As illustrated below, capabilities constantly change and
sometimes they cannot be deployed. As one researcher contended:
But I want to make really clear that you’re capable, there are different things that you’re
capable of. And what you’re capable of will change enormously over time and it will be, of
course, linked in part to whether or not you’re taking medication So this is also a question,
you know, we work a lot with this adherence to medication, and a big question that comes in,
how far should we push that, because we think if we believe, and the Swedish Board of
Health believes that the patient will be more capable if they’re on the medication. The lowest
dose possible, but that they’re on the medication. So that’s also something in there. But one
more thing I want to say about this capability and capability change over time, you can use
that because if you know, if you have a person who’s been, in involuntary care for the
17
treatment of psychosis before. (…) So what you can do is talk to the person when they’re not
in the florid psychotic state and ask them about how would you like us to help you when
you’re up here again.
For this researcher, capabilities are seen as variable over time. The professionals in the
psychiatric care project cannot presume that a patient is capable, as they are tasked with creating
the right conditions for the patient to be capable, and sometimes awarding the patient capabilities
by proxy. Once again medical intervention and social support groups can be crucial.
Healthy ageing in migrant communities: The person as an individual and the person in the group
This third GPCC project challenging the notion of personhood in PCC is about healthy ageing
among people with migrant backgrounds. The aim of the project is to lift strengths through peersupport and stimulate learning and communication among individuals who share similar
experiences of ageing in a migration context. The project is mainly located in community centres
and developed through senior meetings.
One striking challenge of this project is that the person is already situated in a group defined as
the object of intervention. As the experience of migration is the decisive criterion for inclusion in
the project, the experience of a social group is the target of intervention creating tension between
the person as unique and as a representative of a particular group. One researcher described this
tension as follows:
We have talked a lot about how they approach the participants, that all should be regarded as
a unique person. And not just have stereotypic views of ageing persons who are born abroad.
Both that they are ageing and that they are born abroad might create stereotypic images and
try to avoid them and see everyone as a unique person instead, and still, that’s where the
problematic thing for me as a researcher, I believe, ‘cause we regard them as unique at the
18
same time that we also want to point out that they are not so different from ageing persons
who are born in Sweden.
On the one hand, researchers acknowledge the uniqueness of each person. On the other hand,
they do not want to exaggerate the difference of ageing experiences among people from
immigrant backgrounds or over-interpret the uniqueness of each participant in a way that
exoticizes them as a group. Within this project, the goals that a person brings into the care plan
typically encompass the joint participation and experiences of others as well. Models of PCC in
general do not deny the significance of other persons such as partners, family members or close
relatives. However, there remains a strong need to argue for a more relational vision of
personhood in an explicit way in this case.
An important discussion in gerontology has been around understandings of dependence,
independence and interdependence (c.f. Hammarström and Torres, 2010). Referring to this
discussion, one project worker reflected over how the practice of PCC can bring into question the
established ideal of independence as a goal of healthcare delivery:
The culture of the healthcare system today, I would say, the medical positivistic culture, I
have a very specific example in mind when I had, also at the stroke unit, ‘cause that’s where I
have been working mostly, when it was a woman who didn’t come from Sweden and didn’t
speak Swedish and came from a completely different culture where independence is not
important. It was not important to her at all when I talked to her through an interpreter; it
became clear to me that independence wasn’t important to her. It was important to spend
time with her children, it was important to feel like part of a family, to be independent wasn’t
important. And then when she became sick and when she got her stroke, she felt that yeah,
I’m sick now, my children, it’s their mission to take care of me, and the children felt the
same, but still the physiotherapist that I worked together with and the doctor that I worked
19
together with said that she has to be able to get out of bed herself, she has to be able to dress
herself. And then I found it hard to come to – well to tell the doctor and the physiotherapist
what the children and the old woman herself had said is important and what we should focus
on. We finally reached a common intervention plan, that they would take care of her, she
didn’t have to, but it was really, really difficult, and also to regard the family also as the
patient in that specific case, ‘cause they lived at the hospital with her. And they were just as
much in the intervention as she was, it wasn’t just her, it was the whole family who was the
patient. So it was, um, to be able to be person-centred then you had to be family-centred, you
had to focus on each person of the family and regard them as a family.
This account underscores that PCC does not necessarily imply centring the care plan and the
intervention on the individual. This is also highlighted by other projects that have had recourse to
family members or social support groups in formulating a person-centred care plan. However,
what we see here is a notable example of how the person is defined not only within a dyadic
relation between the healthcare professional and the patient, but also with respect to a broader
social context. As clearly articulated by the interviewee, PCC is not necessarily in conflict with
some other healthcare approaches such as family-centred (Rosenbaum et al., 1998) and relationcentred approaches (Nolan et al., 2001 ) and cannot see the person in an individualist approach.
Another challenge in this third project is the barrier of language. The interpersonal relation
between the professional and the person is mediated by a translator. This is linked to a more
general miscommunication between the healthcare services and the patient when Swedish is not
the patient’s first language. One researcher highlighted this issue as follows:
We have a number of people in this study group who speak no Swedish. And we also have
those who come from a completely different culture. (…) They have very little contact with
Swedish society and... they’re doing really badly. They have very little confidence in the
20
medical care and healthcare services, municipalities and generally in the services that you can
get from the municipality. It started when we began to have three-way telephone calls with an
interpreter. That didn’t work; it was really difficult so we moved away from that and took on
a researcher, a project assistant who speaks the language. Even so it seems to be a big
challenge, so we’re doing a lot of work on it now, trying to pre-empt things by providing
these groups with information – for example, through their local radio or various
associations. (…) This is because that’s who they have confidence in. And then working with
the groups – the senior groups – using an interpreter that takes time.
As becomes apparent in this account, persons can resist new collaboration with the healthcare
professional because of their previous experiences of healthcare and stigmatized stereotypes that
have been imposed on them. As in other medical encounters, for a PCC approach to succeed, it is
vital to establish a trusting relationship (Lupton, 1996; Legido‐Quigley et al., 2014); in some
cases, prior to the initial consultation or communication, especially through trusted translators
and/or intermediaries. Including and enrolling such third parties is not however at odds with
PCC, rather it affirms that a person cannot be isolated from other social relations in clinical
encounters going beyond an individualist approach.
Limitations
This paper has some limitations. One limitation is that it only draws on interview material and
researchers’ accounts, rather than on direct observations. While this empirical focus helps us to
better understand how researchers make sense of and develop PCC, it prevents us from
confirming that what individuals say also corresponds to what they do in practice. However, the
strength of the paper is that it focuses on the views of researchers who are working to implement
the GPCC routines. In other words, it sheds light on how researchers make sense of guidelines
and assumptions about the person while working with different groups of patients. Despite its
21
limitations, the paper uncovers an important and varied range of tensions, as experienced and
expressed by people who are in the process of developing and implementing PCC.
Discussion
Almost three decades ago, Deborah Gordon (1988) described how “tenacious assumptions” and
particular beliefs concerning the neutrality and universality of western biomedicine are embodied
and perpetuated in practices. PCC questions these beliefs by designing care in relation to persons’
experiences, goals and wishes and without seeing these as just “another ‘variable’ in the complete
picture” (1988: 27). It attempts to overcome the distancing from everyday knowledge and
understandings and the rigid hierarchy between patients and professionals that the tenacious
assumptions of biomedicine impose. PCC aims to transform professional and patient relations
into genuine interpersonal encounters dedicated to producing collaborative care plans and new
qualities of care. In this respect, healthcare models that seek to attend to the whole person may
enhance the interaction between the professional and the patient and accentuate subjective
experiences in healthcare.
However, as we have shown in this paper, PCC is an emerging framework rather than a panacea
for previous problems. There remain challenges when translating a conceptual framework into
different areas of practice and research in healthcare. As Dewing (2004:43) argues, “there is a
double-bind situation. As a framework that is too general has big holes in it, whereas, one that is
too specific can be non-applicable in certain practice situations. It seems an impossible venture to
develop a detailed framework that can still have space for the diversity of persons”. Thus, PCC
needs to combine a general approach powerful enough to counter biomedicine’s claims of
22
neutrality and universality and a specific approach capable of responding to the endless diversity
of healthcare settings and persons. Given this situation, it is important to recognize that PCC may
risk embedding its own tenacious assumptions and beliefs in everyday practice instead of
respecting the need for greater contextual sensitivity.
The GPCC model of PCC seeks to promote routines to introduce, integrate and safeguard PCC in
different health care contexts. However, these cannot be implemented in a uniform way. In
addition to contextual factors that pose a challenge to implementation of the model (Moore et al.,
forthcoming), there are also assumptions that may threaten the robustness of the model in
practice. PCC may risk becoming too firmly anchored in a particular understanding of the person
as having individual capability of verbal expression, and willingness to provide clear and
genuine narratives and cooperate with healthcare professionals. As we have argued and
illustrated in the case of GPCC, there are likely to be situations where patients do not and cannot
fit these specifications. This requires that healthcare professionals maintain an awareness of the
more general assumptions built into models of PCC. Therefore, PCC related routines should be
continuously debated and reassessed in order to avoid the insufficiently reflexive adoption of a
one-size-fits-all approach. Here, two points should be highlighted. The first is about the person as
narrator. Previous research has shown that narratives are important tools for patients to make
sense of their illness experience (Greenhalgh and Hurwitz, 1999). Patient narratives have also
been said to add the perspective of illness, and of suffering, to the perspective of disease and
biomedicine (Frank, 1995; Kleinman, 1988; Hydén, 1997). Our analysis of three different PCC
projects at GPCC points to the relevance of understanding narratives and elicitation differently
depending on the clinical situation and the persons concerned. We suggest a broader definition of
23
the patient narrative with a more open, relational and experimental approach to narrative
elicitation. Such a definition of narrative would include next-of-kin and family members in joint
interviews and recognize the variable importance of technologies of elicitation such as symbolic
aids or even medication. Hence, the focus would be on the interaction – that which connects
different actors – rather than on the individual person (cf. Moser, 2010). Narratives can be nonverbal as well as verbal and they are not always coherent and established once and for all in the
first encounter. Rather they are typically reconstructed, changed and unfolded over time and in
practices other than dyadic interview settings. Even though formalized narrative elicitation and
collection may be crucial to change healthcare routines, there must be more space, time and
support for healthcare professionals to engage more dynamically, creatively and continuously in
narrative collection.
The second point concerns the tension between the person as a unique individual and the person
as embedded in social and interpersonal relations. We wish to argue that an emphasis on and
belief in the uniqueness of the person generates a tension with the idea that persons are always
situated in social and interpersonal relations and that narratives are embedded, created and
reshaped within and through these relations. Similarly, an overemphasis on the person as an
interchangeable representative of a particular group creates friction with attempts to underline the
significance of the uniqueness of the person. The endeavour for PCC is to find a middle ground
between treating each person as a unique individual and seeing them “in the context of
relationship and social being” (Kitwood, 1997:8). Arguably, those who develop and implement
PCC models should be aware that their attempt to attend to the whole person can turn into
another individualist approach at the expense of ‘more relational and political forms of
involvement’ (Cribb and Gewirtz, 2012). One way to face this challenge would be to support the
24
‘uniqueness’ of every person while not ignoring that this uniqueness is shaped and can only be
expressed through a web of relations, including the one between the health professional and the
person.
Conclusion
The GPCC model of PCC is based on three routines which have been developed in specific
healthcare contexts. As these routines carry assumptions reflecting these contexts it becomes
problematic to directly import them into other healthcare settings with highly diverse patient
populations. The emphasis on individual capabilities of reasoning and verbal expression limits
the conception of personhood. PCC’s own potentially tenacious assumptions about the attributes
of personhood risk distracting attention away from the often highly creative ways that
professionals and patient groups find for translating the ideal of PCC into practice. Architects of
models of healthcare like the GPCC model may need to offer suggestions and guidelines for
practice, yet how these become “routines” must depend on how people are encouraged by their
circumstances to interpret and operationalise them.
Acknowledgements
The study was supported by the Centre for Person-Centred Care (GPCC) and LETStudio at the
University of Gothenburg, Sweden. It was also supported by the University of Exeter. Nicky
Britten was partially supported by the National Institute for Health Research (NIHR)
Collaboration for Leadership in Applied Health Research and Care South West Peninsula at the
Royal Devon and Exeter NHS Foundation Trust. The views expressed are those of the authors
and not necessarily those of the NHS, the NIHR or the Department of Health. The authors are
grateful to the interviewees for their willingness to participate in the study.
25
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship,
and/or publication of this article.
Funding
This research received no specific grant from any funding agency in the public, commercial, or
not-for-profit sectors.
References
Adams T. (1996) Kitwood's approach to dementia and dementia care: a critical but appreciative
review. Journal of advanced Nursing 23: 948-953.
Brink E and Skott C. (2013) Caring about symptoms in person-centred care. Open Journal of
Nursing 2013.
Britten, N., Moore, L., Lydahl, D., Naldemirci, O., Elam, M. and Wolf, A. (2016), Elaboration of
the Gothenburg model of person-centred care. Health Expectations.
doi: 10.1111/hex.12468
Buber M and Kaufmann W. (1970) I and thou, New York: Charles Scribner's Sons.
Cassell EJ. (2010) The person in medicine. International Journal of Integrated Care 10.
Charon R. (2006) Narrative Medicine: Honoring the Stories of Illness, New York: Oxford
University Press.
Cribb A and Gewirtz S. (2012) New welfare ethics and the remaking of moral identities in an era
of user involvement. Globalisation, Societies and Education 10: 507-517.
26
Dewing J. (2004) Concerns relating to the application of frameworks to promote person‐
centredness in nursing with older people. Journal of Clinical Nursing 13: 39-44.
Dewing J. (2008) Personhood and dementia: revisiting Tom Kitwood’s ideas. International
journal of older people nursing 3: 3-13.
Edvardsson D, Sandman PO and Rasmussen B. (2008a) Swedish language Person‐centred
Climate Questionnaire–patient version: construction and psychometric evaluation.
Journal of advanced Nursing 63: 302-309.
Edvardsson D, Winblad B and Sandman P. (2008b) Person-centred care of people with severe
Alzheimer's disease: current status and ways forward. The Lancet Neurology 7: 362-367.
Ekman I, Swedberg K, Taft C, et al. (2011) Person-centered care—Ready for prime time.
European journal of cardiovascular nursing 10: 248-251.
Ekman I, Hedman H, Swedberg K, et al. (2015) Commentary: Swedish initiative on person
centred care. Bmj 350: h160.
Frank AW. (1995) The wounded storyteller : body, illness, and ethics, Chicago: Univ. of Chicago
Press.
Gabrielsson S, Sävenstedt S and Zingmark K. (2014) Person‐centred care: clarifying the concept
in the context of inpatient psychiatry. Scandinavian journal of caring sciences.
Goodwin C. (2004) A competent speaker who can't speak: The social life of aphasia. Journal of
Linguistic Anthropology 14: 151-170.
Gordon DR. (1988) Tenacious assumptions in Western medicine. In: Lock MM and Gordon DR
(eds) Biomedicine examined. Dordrecht: Kluwer Academic, 19-56.
Greenhalgh T and Hurwitz B. (1999) Why study narrative? Bmj 318: 48-50.
27
Hammarström G and Torres S. (2010) Being, feeling and acting: A qualitative study of Swedish
home-help care recipients' understandings of dependence and independence. Journal of
Aging Studies 24: 75-87.
Harding E, Wait S and Scrutton J. (2015) The state of play in person-centred care: A Pragmatic
Review of How Person-Centred Care is Defined, Applied and Measured, London: Health
Foundation.
Health Foundation. (2014) Person-Centred Care Made Simple. London.
Hughes JC, Bamford C and May C. (2008) Types of centredness in health care: themes and
concepts. Medicine, Health Care and Philosophy 11: 455-463.
Hydén L-C and Antelius E. (2011) Communicative disability and stories: Towards an embodied
conception of narratives. Health: 15: 588-603.
Hydén LC. (1997) Illness and narrative. Sociology of health & illness 19: 48-69.
Institute of Medicine (U.S.). Committee on Quality of Health Care in America. (2001) Crossing
the quality chasm : a new health system for the 21st century, Washington, D.C.: National
Academy Press.
Kitwood TM. (1997) Dementia reconsidered : the person comes first, Buckingham ; Bristol, Pa.:
Open University Press.
Kleinman A. (1988) The illness narratives : suffering, healing, and the human condition, New
York: Basic Books.
Legido‐Quigley H, McKee M and Green J. (2014) Trust in health care encounters and systems: a
case study of British pensioners living in Spain. Sociology of health & illness 36: 12431258.
Leplege A, Gzil F, Cammelli M, et al. (2007) Person-centredness: conceptual and historical
perspectives. Disability & Rehabilitation 29: 1555-1565.
28
Lupton D. (1996) Your life in their hands: trust in the medical encounter. In: James V and Gabe J
(eds) Health and the sociology of emotions. Cambridge, Mass. ;: Blackwell Publishers,
157-172.
Mattingly C. (1998) Healing dramas and clinical plots : the narrative structure of experience,
Cambridge: Cambridge University Press.
McCormack B. (2004) Person‐centredness in gerontological nursing: an overview of the
literature. Journal of Clinical Nursing 13: 31-38.
McCormack B and McCance T. (2010) Person-centred nursing : theory and practice, Chichester,
West Sussex: Wiley-Blackwell.
McCormack B and McCance TV. (2006) Development of a framework for person‐centred
nursing. Journal of advanced Nursing 56: 472-479.
McCormack B, Roberts T, Meyer J, et al. (2012) Appreciating the ‘person’in long‐term care.
International journal of older people nursing 7: 284-294.
Mead N and Bower P. (2000) Patient-centredness: a conceptual framework and review of the
empirical literature. Social science & medicine 51: 1087-1110.
Moore L, Britten N, Elam M, Lydahl D, Naldemirci O, Wolf A. (forthcoming) Implementation of
person-centred care in different contexts: identifying barriers and facilitators in practice.
Scandinavian Journal of Caring Sciences.
Moser I. (2010) Perhaps tears should not be counted but wiped away: On quality and
improvement in dementia care. In: Mol A, Moser I and Pols J (eds) Care in practice: On
tinkering in clinics, homes and farms. Bielefeld: transcript Verlag, 277-300.
Nolan M, Keady J and Aveyard B. (2001) Relationship-centred care is the next logical step.
British Journal of Nursing 10: 757-757.
Pols J. (2005) Enacting appreciations: Beyond the patient perspective. Health Care Analysis 13:
203-221.
29
Rogers CR. (1951) Client-centered therapy : its current practice, implications, and theory,
Boston: Houghton Mifflin.
Rogers CR. (1957) A Note on the" Nature of Man.". Journal of Counseling Psychology 4: 199.
Rogers CR. (1961) On becoming a person : a therapist's view on psychotherapy, Boston:
Houghton Mifflin.
Rosenbaum P, King S, Law M, et al. (1998) Family-centred service: A conceptual framework
and research review. Physical & Occupational Therapy in Pediatrics 18: 1-20.
Sakellariou D, Boniface G and Brown P. (2013) Using joint interviews in a narrative-based study
on illness experiences. Qualitative health research 23: 1563-1570.
Sidani S and Fox M. (2014) Patient-centered care: clarification of its specific elements to
facilitate interprofessional care. Journal of interprofessional care 28: 134-141.
Stewart M. (2001) Towards a global definition of patient centred care. Bmj 322: 444-445.
Stewart M. (2003) Patient-centered medicine: transforming the clinical method: Radcliffe
Publishing.
Thorne B. (2003) Carl Rogers, London: Sage.
30