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Disability and Rehabilitation
ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: https://www.tandfonline.com/loi/idre20
Person centered care in neurorehabilitation: a
secondary analysis
Gareth Terry & Nicola Kayes
To cite this article: Gareth Terry & Nicola Kayes (2019): Person centered care
in neurorehabilitation: a secondary analysis, Disability and Rehabilitation, DOI:
10.1080/09638288.2018.1561952
To link to this article: https://doi.org/10.1080/09638288.2018.1561952
© 2019 The Author(s). Published by Informa
UK Limited, trading as Taylor & Francis
Group.
Published online: 29 Jan 2019.
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ORIGINAL ARTICLE
Person centered care in neurorehabilitation: a secondary analysis
Gareth Terry and Nicola Kayes
Centre for Person Centred Research, Auckland University of Technology, Auckland, New Zealand
ABSTRACT
Person centered care has been described as being in its ascendency, despite some of the complexities of
embedding it within healthcare systems. The emphasis of research now seems to be moving toward the
promotion of cultures of care that support the efforts of practitioners. Informed by some of the principles
of positive deviancy, where some of the solutions for change can be found within existing cultures and
practices, this paper aimed to identify examples of person-centered care in existing practice. Reporting
on a thematic analysis of qualitative datasets from three preexisting projects, we constructed four themes
from these data: (1) That patient experience and needs should always be understood in terms of their dif-
ficult new reality; (2) the need for a relational orientation in care; (3) the importance of treating trust as a
currency; and, (4) efficacy in rehabilitation is co-constructed, and enabled by the efforts of clinicians.
Identifying positive examples of care, enacted irrespective of the framework of care they are found within,
may provide opportunities to critically reflect on practice. The context for care and the extent to which
that context constrains or makes possible person-centered care in practice will also be discussed.
äIMPLICATIONS FOR REHABILITATION
Cultures of care are central to enhancing person-centered practice.
Care begins with recognition of patient’s difficult new reality.
Building trust helps enable capacity for improvement.
ARTICLE HISTORY
Received 18 March 2018
Revised 5 November 2018
Accepted 18 December 2018
KEY WORDS
Person-centredness;
qualitative; rehabilitation;
thematic analysis; practice
The notion of person-centredness within rehabilitation is one that
has gained in use and application for a number of years. Person-
centered care has been understood to be an important, positive
movement within rehabilitation, but has also been historically
described as suffering from a lack of definitional clarity [1–4]
–this seems to be changing [5]. Some authors have described
person-centredness as currently in its ascendency, with theory
and practice beginning to cohere around substantive, well
defined models, largely associated with nursing [5,6]. Within
healthcare more generally, person-centered care has been struc-
tured as a counter to a reductionist biomedical focus on disease
or trauma, or to the systems, budgets, or staff focus that many
hospitals and other healthcare providers appear to operate under
[7,8]. When assessing wellbeing and satisfaction, there is little
question that person-centered care improves the experience of
patients [9], with increasing evidence that relationally orientated
care is central to any number of positive outcomes [5,10,11].
Leplege et al. [1] have described person-centered care as a
multidimensional concept, capturing various meanings related to
who the patient is (including societal understandings of the
nature of personhood [4,12,13],) the type of care they need, and
differing understandings of patient capabilities [7,13]. Perhaps due
to the broadness in many definitions, these meanings can be
applied variably, depending on the dominant institutional frame-
work involved [9]. For instance, within contexts where neoliberal
economic policy saturate the direction of public services, health
and otherwise, person-centered care can be viewed as an avenue
to improve features of care such as over or underuse of services,
and enhance cost saving measures [9]. When person-centered
care is framed in this way, it can be misunderstood as consumer-
centered care, where the provision of information and choice are
prioritized over relational orientations to care and the time and
effort needed for this orientation. Further, in these cases, the aver-
age patient, rather than the particular patient, remain the focus of
treatment. Consequently, person-centered care can risk being
superficially layered onto preexisting models of healthcare, rather
than changing cultures in ways that best support patient experi-
ence [14]. In contrast, references to patient-centered care seem
to reduce the person to their body and experiences of care
within the system, rather than a wider contextualized lens
that incorporates an understanding of the whole per-
son [12,15,16].
Such systems-driven and defined applications of ‘person-centered
care’can end up being associated with metrics and box ticking
activities [17].Theymayalsoimplicitlyrelyonthewillingnessof
clinical staff to engage in ‘above and beyond’activities that may
not be rewarded, nor widely promoted within the wider cultures of
healthcare services [6]. Increasing evidence also suggests that
bringing true paradigmatic changes forward from philosophies of
person-centredness, or lip service to these, to fully implemented
practice, will involve changing deep organizational structures and
patterns that are highly complex [8]. For this reason, some authors
CONTACT Gareth Terry gareth.terry@aut.ac.nz Centre for Person Centred Research, School of Clinical Sciences, Auckland University of Technology, Private
Bag 92006, Auckland 1142, New Zealand
ß2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/),
which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in
any way.
DISABILITY AND REHABILITATION
https://doi.org/10.1080/09638288.2018.1561952
have suggested a unified conceptual framework that captures much
of the overlap in definitions of person-centered care, and focuses
on principles rather than the performance of certain sets of
tasks [5,6].
Given that historically dominant modes of care still persist
alongside shifts toward more person-centered models, it seems
important to bolster the latter in ways that create real and lasting
change. There is still a strong emphasis on models of care that
prioritize the expertise of the clinician over the experience of the
patient –especially at the acute level [18] and often dualistically
focus care on the body rather than the person [12]. Although
some features of acute, episodic situations may mean that a clin-
ician orientated interaction are essential, increases in survivability
following trauma or chronic illness, mean most clinician/patient
interaction will occur at the chronic level [19,20]. Further, the cur-
rent demographic make-up of many Western societies, often
referred to as the ‘ageing society’means a broader focus on
chronic health issues is becoming the primary work of healthcare
systems [21]. Certainly within the rehabilitation sector, where the
vast majority of work is within this chronic setting, there
seems very little justification for maintaining systems or clinician-
centered practice, when the evidence is weighted toward the
benefits of person-centered care.
In order to more fully map person-centered care, the experien-
ces of people within systems where person-centered care has
occurred are needed [22]. Following this line of thought, Todres
et al. have suggested that such qualitative accounts of people’s
lifeworlds are necessary to fully understand what works and what
does not [22,23]. Further, theories of positive deviance indicate
that rather than external (and arbitrary) forces creating and shap-
ing change within a given culture, solutions to problems and diffi-
culties can often be found within the culture itself [8,24,25].
Changing healthcare cultures to a focus on person-centredness
can risk focusing on what people are not doing, so identifying
examples of positive deviance within a given culture or set of cul-
tures and bolstering these, may provide the best avenue for posi-
tive change [24]. There has been strong suggestive evidence that
‘what works’might be found within organizations –where
patients are more successfully recovering from injury or illness or
managing their symptoms –and may have something to do with
the existing efforts of practitioners, even where rhetoric of person-
centered care does not exist.
In this paper we aimed to identify and describe patterns of
care across a variety of healthcare settings where, irrespective of
the philosophical framing of care, person-centered care, valued by
patients, was enacted and practiced. We will focus on patients’
descriptions of care that have worked for them, whether it has
been defined as person-centered or not.
Methods
Design
This is a secondary analysis of three qualitative datasets, from a
University-based research centre that has engaged in over a dec-
ade of research seeking to enhance understanding of the inter-
face between clinical practice and patient experience in
rehabilitation. Client experience and new ways of working for
clinicians are put at the forefront of the Centre’s work, in an
attempt to enhance rehabilitation among people living with the
enduring consequences of injury or illness. This project sought to
capitalize on the Centre’s existing datasets and research portfolio
to gain a wider insight into how person-centered care might be
enacted in practice.
Following Heaton’s[26] guide to secondary analysis, this pro-
ject is structured as (1) a supra analysis, and (2) relying on an
informal mode of data sharing. The former orientation situates it
as transcending the research questions and focus of original stud-
ies, while the latter identifies that the primary investigator was
not involved in the data collection, nor any previous analysis of
the datasets, but was given access to the projects specifically for
the purposes of the current project. In order to manage wider
concerns about representation and separation of the first author
from data generation and project design [27] meetings were set
up with researchers from the original projects to discuss coding
and interpretation. Further, the second author had oversight of all
three projects, and was involved in design, data generation, and
analysis, which was drawn upon in the design, analysis, and write-
up of this paper.
Projects within the Centre’s database were examined by the
first author, with twelve identified that (a) sought to capture
experiences and perspectives regarding the interface between
patients, clinicians, and health services in a rehabilitation context;
(b) had a qualitative component; and, (c) data were generated
primarily from interviews or focus groups. Three projects were
purposively selected from within this group given their rich data
targeted to the phenomenon of interest, and that their patient
participant base were all recipients of neurorehabilitation. The ori-
ginal purpose and participants of each primary study were:
1. Understanding the construct of patient engagement follow-
ing stroke: Individual interviews with 19 people who were
between 3 months and 6 years post stroke, purposively
sampled for a range of impairments and severity. The study
also contained focus groups and individual interviews with
18 rehabilitation providers including physiotherapists (n¼10),
occupational therapists (n¼3), social worker (n¼1), and field
officers (n¼4).
2. Exploring the core components of the therapeutic relation-
ship in a neurorehabilitation context: Individual interviews
with 14 people experiencing rehabilitation between 1 month
and 13 years following a neurological event. The majority
had experienced traumatic brain injury (n¼6) or stroke
(n¼3). Focus groups and individual interviews with 14
rehabilitation providers including physiotherapists (n¼6),
occupational therapists (n¼2), psychologists (n¼2), and a
nurse, speech and language therapist, clinic manager and
social worker (n ¼1 of each).
3. Improving the outcomes of people with long-term neuro-
logical conditions through improved communication and care:
6 individual interviews with people who were purposively
sampled across conditions, from a number of neurorehabilita-
tion sites; one interview with a family member carer;
All projects met the ethical guidelines of the Auckland
University of Technology. The total dataset was comprised of 40
interviews with patient participants, family members, or carers;
three focus groups with patient participants; two interviews with
clinicians; six focus groups with clinicians (total n¼32). All partici-
pants were given pseudonyms distinct to this new project.
Analysis
We used thematic analysis following Braun and Clarke’s[28,29] six
phase approach, taking a critical realist ontology in relation to the
data [30]. Critical realism treats knowledge and experience as
mediated and constructed through language, while acknowledg-
ing the material and social structures and mechanisms that
2 G. TERRY AND N. KAYES
generate phenomena. The data were treated as a single data set,
with the research question guiding analysis at every phase, this
being: “In what ways have patients experienced person-centred
care being enacted in their healthcare.”The first author familiar-
ized himself with the data, taking casual observational notes
about their content. This was followed by inductive research
question informed coding, at both semantic (descriptive) and
latent (interpretative) levels. Themes were then constructed from
these codes and their associated data, first, by establishing candi-
date themes, which were tested for their utility in telling the story
of the data, then reviewing and finalizing themes. Both authors
discussed the content of codes and candidate themes using the-
matic maps to make sense of them. We generated four themes
from the data that described the doing of person centered care,
and the ways in which it can be experienced by patients. Both
patient and clinician data informed the construction of themes,
however, data extracts from the patient participants will be priori-
tized in the analytic section of this paper, and hereafter references
to ‘participants’are to patients, unless otherwise identified. This
decision was made to emphasize that the implications of care,
poor, indifferent, or otherwise, often fall on the patient [22].
Results
We generated four salient themes related to accounts of person-
centered care in practice within the dataset. Each theme cohered
around a central organizing concept –or the key idea than under-
pins the thematic explanation of the data [29]: (1) That patient
experience and needs should always be understood in terms of
their difficult new reality; (2) the need for a relational orientation
in care; (3) the importance of treating trust as a currency; and, (4)
efficacy in rehabilitation is co-constructed, and enabled by the
efforts of clinicians.
“So there’s all this danger, you know, you don’t sort of realise
until you get home”–a difficult and unstable new reality
This theme describes the lived context that necessitates rehabilita-
tive care according to our participants. All participants spoke of
the ways patient’s lives and self-identities are radically changed
by the experience of a new, and often sudden, impairment or
range of impairments. As a consequence of these changes, the
world was often presented as more risky, troubling, and unfamil-
iar. This was evidenced not only in the ways that cognitive,
physical, and emotional impairments impacted participants lives,
identities, and those around them, but also having to manage
and understand the processes of rehabilitation and the foreign
nature of clinical and gym spaces. These are features of the
rehabilitation ‘landscape’often taken for granted by clinicians.
Participants also spoke of the impact of their condition(s), and
the initial sense of confusion, struggle, and emotional trauma that
came with the clash between the impact of their injury or illness
on the expectations, hopes, and embodiments of their reality –a
biographical disruption [31,32]. For a number of participants, this
change to their lives was constructed as overwhelming, not easily
integrated into their preexisting identity. One participant spoke of
the intensity of these early weeks, and the suicidal ideation this
resulted in:
“Certainly the dealing with the shock and change and challenge of
perhaps the highlight for me, in that first 3 weeks anyway, was going
through a phase when I truly, really wanted to die. It was in conscious
and rational choice. I choose to die, death is the best option”(George,
Study 1, 65, Person post-stroke).
Navigating successfully through the new reality their illness or
injury had created was marked as an important feature of this
early period, with George providing a more extreme example of
the need for good navigation. Many participants spoke of depres-
sion, anxiety, and anger at the changes their condition had
effected upon them that they often found difficult to articulate to
those around them. However, as their first environment was often
hospital based, many participants also described being ‘protected’
from the full extent of their new reality, until after they had left
more intensive care:
“Because in hospital, in 2 months, I never considered myself as sick.
That may seem strange and it wasn’t until I got home that I realised
how ill I had been. They sort of treat you like mushrooms in there and
keep you in the dark. It wasn’t until I got back onto the internet and
started reading about other people’s experiences and the fact that I
was having trouble coping with some things, so it was only then that I
realised ‘oh gee I had been crook’” (Joseph, Study 1, 70, person
post-stroke)
Joseph’s description of slowly coming realize the full impact of
his stroke was another common thread within this theme.
Participants described moments of increasing awareness, when
their difficult new reality was suddenly clear to them. This gain in
clarity was commonly described as traumatic, with various
mechanisms (such as denial) referred to by participants to man-
age it. Clinicians and researchers have described these processes
in various ways –referring to them as insight deficits or shifts in
self-identity [33].
For a number of participants, it was the orientation by clini-
cians toward simple tasks that highlighted how different their
bodies and lives had become. Goal setting was often described as
depressing or disempowering as a consequence, with broader
long-term hopes deferred for their immediate clinical needs:
“That was hard because I was quite unrealistic at the beginning.
I remember the first time the therapist at the hospital talked about
setting goals, I said something about tramping again perhaps
swimming perhaps even playing golf again –she said, “What about
getting up in the morning and getting dressed?”and I thought, “Hell’s
teeth we’re on a different page here”and my heart sank a bit”(Andy,
Study 2, 68, person post-stroke).
Although it is not uncommon for clinicians to propose longer-
term goals in the rehabilitation process, the early emphasis tends
to be on independence and daily living functioning –likely due
to safety and discharge concerns [34]. However, even as rehabili-
tation progresses, practitioners can privilege certain goals over
others, demonstrating discomfort when patient priorities do not
match their orientations [35]. These practitioner privileged goals
can tend toward physical function, the short term, and be conser-
vative regarding future outcomes –and may result in patients
deeming their own goals “unrealistic.”Mismatches between
patient and practitioner goal setting in our data, often went in
the direction of the practitioner’s biases, with their expertise used
to justify this.
Comparisons were routinely made between the clashing of
two realities, the impact the differences had on patients self-iden-
tity, and the difficulties they had processing these differences.
For instance:
“I’m not a person to sit around and do nothing. This has been a hell of
a shock because I’ve always worked with my hands and doing things.
So, suddenly boom, you know, can’t do it anymore, because when I
first went to hospital, like I was carried in. Couldn’t walk. Couldn’t talk.
Couldn’t go to the bathroom. Couldn’t do anything”(Paul, Study 1, 68
person post-stroke).
Needing time to process the impacts of a stroke, head injury,
or other illness, was often confounded where there were
PERSON CENTRED CARE IN NEUROREHABILITATION 3
cognitive effects, but these were not described as the defining
characteristic of their experience. Within the accounts of Paul and
others, it was the suddenness (“boom”) of the change that was
most profound, undermining their sense of self, and something
not often recognized by those around them providing
care [36,37].
The process of returning home was commonly identified by
clients and clinicians alike as a movement toward independence,
however, most clients spoke of this period as extremely difficult,
fraught with a sense that everything had changed for them
[19,38]. Those people who acted in a support role also spoke of
feeling overwhelmed, having to deal with a new world that made
even the familiar risky:
“No. You just sort of get excited thinking we are going to go home, it’s
going to be wonderful.”You get home and then there’s all these
obstacles and stuff like, oh we had to have when we first got home
ACC had to install a thing around the fireplace which is blocked up but
because he’s lost peripheral vision and that as well and depth there’s
that little step he kept. So there’s all this danger you know, you don’t
sort of realise until you get home. And then if you have got nobody
there to support, to sort of like turn to it’s a nightmare”(Anna, Study 3,
Parent of child with head injury).
Similar to Anna’s“nightmare”, metaphorical language such as
“new terrain”,“a whole different world”pervaded the data,
describing what had once been a safe and familiar environment –
the home. New obstacles were identified that made previously
simple tasks, such as walking to collect the mail, problematic.
When rehabilitation was begun, it was almost always described in
similar terms, with many participants speaking about the lack of
familiar landmarks within the new reality:
“The first session that I did with all of the different therapists was, I was
going into the great unknown, I had no idea what was being set down
or what was maybe going to be set in place for me”(Finau, Study 2,
59, person post-stroke).
Practitioners viewed positively by participants, were described
as guides through the difficult new reality, giving clear informa-
tion about the severity of their condition, pathways to provide
improvement, and warnings about the limits and constraints their
condition placed on them. Understanding the centrality of a
patient’s difficult new reality did not mean practitioners assumed
that the patient was vulnerable or incapacitated [13]. What
seemed essential was a sense that these guides both understood
the wider terrain of the difficult new reality, but also the individ-
ual needs of those attempting to navigate it. More personalized,
engaged care of patients was always described in terms of the
relational orientation of a practitioner, even above their skills or
knowledge. It is this area that our next theme describes.
Theme 2: “I mean I’ve only known them all of two weeks but
you’d swear I’d known them for six months”–relational
orientation in care
The second theme we constructed spoke directly to the notion of
the therapeutic relationship [39] and its creative and generative
scaffolding of rehabilitation [40]. Within the dataset, participants
spoke of ‘success’with a patient as moving beyond a set of tasks
(and sometimes even initial clinical outcomes), treating the rela-
tionship between patient and clinician as the priority. The thera-
peutic alliance was understood not simply as a welcome addition
to rehabilitation, but as the basis of it.
As with theme one, examples of what patients experienced as
good and bad care and therapy were deployed in interviews, with
hospital experiences often portrayed more negatively than
outpatient rehabilitation. This would typically be discussed in
terms of the volume of clients hospitals had to deal with, as com-
pared with the greater time community therapists could spend
with clients. For instance:
“So I just think they were just a hospital organisation of course. There
wasn’t much emotional buy-in. There was no real relationship. Maybe
because they had so many people coming through, they just, they
haven’t got time. I think if you don’t bond to your PT, to your therapist
you know, you don’t get as much as you should out of it. If they’re
aware when you walk in tired or you’re down”(Andrew, Study 2, 52,
person post-stroke).
The need to have a “real relationship”with health professionals
was described by almost all of the participants as being at the
heart of rapid improvement [41]. Much of this entailed a familiar-
ity developed over time, but the “bond”was consistently con-
structed as something that could be established quickly, and gave
momentum to progress –even in the highly transitory space of
acute wards. Knowing they were not simply a task to be fulfilled
or ticked off, was described as giving patients a sense that their
needs were important, that their difficult new reality had been
recognized. In contrast, being treated as just another number,
seemingly without consideration for their unique needs could
have the opposite effect:
“The same things happens in the hospital you’ve got consultants
coming around you’ve got the doctors coming around. They will
invariably say “I’ve got other patients to see”and you feel like saying
“don’t forget I’m one of them. You have still got to meet my needs”
(Paula, Study 3, 20, person with idiopathic intracranial hypertension).
Having needs met through clinicians being wholly present in
the time available, especially for those patients with communica-
tion or cognitive difficulties, was marshaled as a contrast to stand-
ard clinician accounts of ‘expertise’,‘experience’,or‘evidence’as
doing the work of rehabilitation (see Kayes et al. [42], for critique
of this sort of account). Where ‘expertise’and technical, disciplin-
ary knowledge was privileged, this appeared to result in clinicians
treating their clients as a set of tasks, or parts of a body needing
to be repaired. However, where relational practice was
constructed as legitimate rehabilitation work, this appeared to
contribute to a more human approach to care. This was described
as inevitably leading toward client engagement and participation
in clinical decision making.
Rehabilitative therapy can occur at any number of levels: phys-
ical, cognitive, affective, or spiritual, but the emphasis of care in
rehabilitation is often on physical and cognitive improvement in
order to achieve independence [43]. Many participants identified
that what seemed to be a dead end of improvement in the phys-
ical sphere could result in unacknowledged possibilities across
others [1]. June, for instance noted:
“Well it’s the caring and the, yes that’s it. It made me feel good. I sort
of felt ‘oh my god I’ve got all these things wrong with me, what must
these girls think?’But as soon as we were talking and they said ‘just do
it if you want to’and all this and I felt good, I thought I wasn’t
pressurised that I had to do it […] They were understanding. They said
‘we understand what you have got and when you can do it, you do it.
And you’ve got your bike if you feel you can do more on your bike’”
(June, Study 2, 72, person with Multiple Sclerosis and
Rheumatoid Arthritis).
June argued several times that she had been positioned as a
‘problem case’by various therapists and specialists. She com-
mented that her dual diagnosis of Multiple Sclerosis and
Rheumatoid Arthritis had resulted in slow progress in her rehabili-
tation and had made her feel like a burden on the health system.
What seems important in her account is the construction of self-
worth she gained from her time in rehabilitative care. That she
4 G. TERRY AND N. KAYES
was still involved and engaged in her rehabilitation over a long
period of time indicates the value she ascribed to the care she
received. Her physical recovery and adaptation may have come
slowly, but it was continuous, due to the efforts of her therapists.
Unfortunately, such positive accounts of clinical openness were
not typical, with most accounts indicating that engagement was
often not viewed as a two way process, co-constructed within the
clinical relationship, as it is increasingly understood to be [44]
Practitioners described positively by participants appeared to
engage with patients beyond the task or program, motivating
them through the relationship built up between them. Many of
the patient participants spoke of the various ways they could tell
if a health professional was interested in their care, and the
impacts that had on their various recoveries. Sam described it the
following way:
“It’s all about making you feel interested that, or you’re wanted, if you
know what I mean? If you’re just a therapist talking to me and you got
no, ahhh you’re pretty low key, and it’s just a job for you, it’s going to
make life a lot difficult for me personally. But in that the people here
they treat you as a family member really it’s quite good quite nice”
(Sam, Study 3, 25, person with head injury).
Being “low key”or simply relying on expertise over relation-
ship (e.g., “it’s just a job for you”) was described by many as bar-
rier to care being experienced positively. Depth of relationship
(or perception of such) was constructed by participants as
providing the potential to enable greater engagement, engender
motivation, and support a willingness to participate in tasks that
seemed difficult or mundane, and promote confidence to do
more than the patient thought possible –something we will
return to in theme 4. Some participants described a sense of reci-
procity, with this way of working having the advantage of meet-
ing the needs and goals of the clinician:
“She took her time and explained it all to me and that made it easier
for me to try and help her out. Try and do the things she wanted to
do. You know I would have crawled over hot coals for her and it’s just
the way she. It was just her mannerisms I suppose. I don’t know
whether it’s something you can teach”(Michael, Study 2, 68, person
with stroke).
Almost all of the participants described this relational orienta-
tion as intangible, and therefore complex to teach. However,
some key ingredients to a relational practitioner can be identified
from their accounts that highlight the importance of the clinician
in creating a context where this sort of relational care can occur.
First, a willingness to spend time with clients, building a relation-
ship as part of the ‘duty’of care. Second, a willingness to engage
with the person as a person, irrespective of whether outcomes
follow a ‘normative’pathway to independence. Third, a willing-
ness to be responsive and adapt to the individuals in their care,
not attempting to quickly categorize them or force them into a
protocol driven process. One feature of this relational orientation
will be discussed in the next theme: recognizing the value of trust
within care.
Theme 3: “I think it’s important to gain the faith of the person
that you are dealing with”–a currency of trust
Structured around accounts of experience with therapy, this
theme identified one of the key components of relational care -
trust. Following a significant health crisis, and the fundamental
life changes this enveloped them with, patient participants often
spoke of the initial leap of faith that was necessary to trust their
doctors/therapists and the care they offered. The metaphor of
currency is used, as participant accounts collectively constructed a
notion of trust as something that persists beyond dyadic arrange-
ments, and can be gained, lost, or transferred to other practi-
tioners and contexts. It also reflected talk of trust’s protective
effects, and its ability to ‘purchase’hope and confidence.
A number of people explicitly used the language of trust to
describe their experiences of good therapy. This was often pre-
sented as being a product of vocational competence, and a will-
ingness of professionals to use that competence in ways that
were tailored to meeting the unique needs of the individual. For
example, Nigel made the following comments:
“Just with what’s going on with me, physically. If I have issues, posture,
I’m doing an exercise wrong, just be straight with me and explain to
me, say “you are doing that wrong it should be done this way.”Which I
find with her, she is very good. Just trust, I guess which is how I used
to work with my customers. You build that trust up”(Nigel, Study 3, 36,
person with head injury).
Nigel positioned himself as highly engaged and involved in his
rehabilitation, so assurance that his efforts were not being wasted
were considered a priority. Many participants spoke similarly
about getting good information, and this providing them with
some degree of control over their new reality [45]. The construc-
tion of trust as ‘built up’over time was often deployed by partici-
pants, and in Nigel’s account this was a product of providing the
right information, or evidence of skill, at important times.
For some participants, competence and confidence in skill
were the key ingredients needed for a trusting relationship with
health professionals. For others a more relational orientation
toward vocational competence seemed apparent:
“I guess like I can only speak for myself, but once I’ve spoken to the
person a couple of times and sort of get where they are at, and know
that they are just being straight up with me and they are doing their
job and whatnot, then you sort of feel like you can relax and it’s not
something that comes instantly, you know some people it does but
other people it might take a couple of sessions to get the feel for
them”(Pauline, Study 2, 50, person with head injury).
Although many participants described vocational competence
helping with the initial faith in a health professional, it was gener-
ally not enough to sustain the trust needed for a positive experi-
ence of rehabilitative care. Like Pauline, many participants spoke
of their care improving as a direct consequence of time spent
with clinicians who appeared to recognize that engagement was
a two way process [44]. However, health professionals losing
patient’s trust, especially at the earlier stages of care, was
described continually throughout the data, with many, very
detailed accounts deployed as examples. Often what was appar-
ent in these stories was the sense that a need to build trust was
not important for the professional, with a task-orientated
approach dominating:
“He was all like “I’m the doctor”pretty much. And then I was just like,
oh yeah I just don’t like doctors like that. And it really bugged me how
doctors, how we just accept it kind of. How people accept that doctors
are like dicks pretty much, but it shouldn’t be like that. Like my dad is
an accountant and I don’t see how it’s any different from an
accountant. Like if he was to treat his clients like that or if he was rude
or he didn’t listen or he was like, it just wouldn’t happen”(Paula, Study
3, 20, person with idiopathic intracranial hypertension).
Good examples of building trust certainly included seeing
results and having those results placed within an understandable
framework, but having a therapist who listened, rather than pre-
scribed, and being a stable positive presence that they could rely
on in the navigation of their difficult new life was primary to the
continued accumulation of trust.
In order to clarify the differences in therapy, good professio-
nals were often described using terms such as putting clients at
PERSON CENTRED CARE IN NEUROREHABILITATION 5
ease, or making them feel relaxed, with participants identifying
the ways this might occur:
You know about them. They know about you. You’ve got to feel
relaxed in their presence you know. Just as I say I found it hard that
they know all about me and I know nothing about them. I think it
would be nice if you could know this person is this, they’ve done this,
this is their training, they’ve been here so many years. They’ve worked
with stroke people. To make you feel at ease straight off. Just to
complete strangers, you get sick of meeting strangers. You actually get
sick of professionals in your life”(Brian, Study 1, no age given, person
post-stroke).
Knowledge about a practitioner, their history, their skills, and
their personhood, all shaped the way a patient experienced care.
Although most participants spoke about the relationship being
professional rather than personal, an increasing awareness of how
a clinician worked, and the experience and knowledge they could
use to guide clients, helped engender trust. Relying on expert
status to justify decisions was considered a feature of poor care.
Therapists and doctors alike who continually maintained a profes-
sional distance were portrayed as impacting the therapeutic rela-
tionship in a negative fashion –disrupting any trust vocational
competence might otherwise enable. This is consistent with
Austin et al.’s critical reflection on the professional ‘boundary’
metaphor and the need for more dynamic and fluid conceptual-
ization that allows for reciprocity in sharing of self as a thera-
peutic tool in its own right [46].
Maintaining trust was not always about a relationship with an
individual health professional. A number of participants noted
trust could occur within the context of healthcare teams, where
there was often a degree of transferability or sharing of trust. This
transferability could also occur in the movement of a patient from
one care provider to another. The continuum of care is a well
understood concept within healthcare, with transitions often
being problematic [21]. Links and communication between vari-
ous forms of care provider are thought to enable smoother transi-
tions, and in several cases, there seemed to be a similar effect
with trust being passed from one professional to another:
“I don’t know if it’s the usual practice but my physio at [inpatient
rehabilitation facility] had actually took me out one day to the
community practice, and we met them, and I actually saw my physio
and the physios there talking to each other and getting really excited
and talking about all these new plans for me and stuff, and it was sort
of like just really important to see that handing over. I knew that the
seeds had been sown and sort of thing and that I wasn’t just going
into a place that completely didn’t understand me and I had to build
my whole sort of yeah”(Sam, Study 3, 25, person with head injury).
Within many accounts, the ‘contagiousness of trust’was con-
sidered a mitigating effect throughout care. Those clinicians that
went outside “usual practice”and attempted to bridge gaps in
care not only garnered trust for themselves, but also seemed to
contribute their trustworthiness to others within their teams, and
to the next line of professionals in a patient’s care. Sam’s excite-
ment at moving into a new facility can be set in contrast to
accounts of abandonment, which were prevalent through the
data and in the broader literature [38,47,48]. When reflecting on
positive experiences, clinicians were also described as acting in
ways that supported and shored up patient’s capabilities, seen as
enhancing and being enhanced by trust.
Theme 4: “she tends to make you believe in yourself a lot more
than you normally would”–enabling efficacy
This theme is built on accounts that seemed to act as a counter
to existing discourses of self-efficacy and independence that
continue to define therapy [43]. In particular, these related to
what was commonly described as the task orientations of thera-
pists, and the prioritization of notions of patient adherence to
and compliance with rehabilitation tasks. Instead of a patient’s
ability to accomplish tasks and move through the rehabilitation
process being understood as an internal characteristic, almost all
clients and some therapists spoke of a relational production of
efficacy. This perspective constructs the role of therapists and sig-
nificant others as enhancing or enabling efficacy, or a sense of
autonomy, the patient may not have, or feel capable of, especially
at the beginning of the rehabilitation process. In this way the
concept seems to be closely affiliated with theories such as the
relation-inferred self-efficacy component of the tripartite model of
efficacy (i.e., they believe in me, therefore I believe in me) [41,49]
and relational autonomy [14,50].
As discussed in theme 1, participants would often draw on
descriptions of themselves prior to their difficult new reality, in
order to make sense of their current experience. Johnnie, for
instance, commented on his identity as a ‘fixer’:
“I knew before I met her that, all my life I had been a ‘fix it yourself, if I
haven’t got one I’ll make it’sort of thing, I am always fixing things and
I recognised quite early on that this was something I wasn’t going to
be able to fix myself. I needed some help. So I leaned on people pretty
heavily I suppose”(Johnnie, Study 3, 52, person post-stroke).
The independence imperative that seems to drive much acute
and rehabilitative care [51], often made little sense to patient par-
ticipants as they experienced their difficult new reality. Like many
of the participants, Johnnie’s accounting for the important fea-
tures of his rehabilitation experience set his care within a web of
supportive personal and therapeutic relationships. In contrast to
his experience, individualistic expectations of self-motivation, self-
advocacy, and even pressure to make decisions, were described
by participants as exhausting and occasionally as soul-destroying.
Participants also spoke of being unable to see past the new
limitations on their capabilities in the earlier stages of their
rehabilitation, noting, in particular, the absence of self-belief.
Some clinicians were framed as giving something of themselves
to their clients, to enable the necessary motivation to enter into
rehabilitative programs:
“You sort of get the feeling that yes you can do the things she teaches
you yeah and she I don’t know she tends to make you believe in
yourself a lot more than you normally would”(Heather, Study 2, 56,
person with head injury).
Reliance on this type of care was commonly described by par-
ticipants as making them more capable of achieving certain goals
and more stable in their responses to the difficult new reality
they faced. In contrast to neoliberal discourse and policy that pla-
ces the burden of response to care and adhering to rehabilitation
on the patient, and seems concerned that dependence on carers
can undermine a patient’s capacities to improve [52], most
patients spoke of the opposite effect in their lives. Harold, for
instance, spoke of his therapist’s ability to shift his emotional and
mental state when he felt unable to do so:
“I think the therapist and their listening and their flexibility in being
able to work with me if I wasn’t quite feeling there or involved, they
had the ability to change it. And that I understood what was required
of me in what they were saying. And caring. They have a lot of energy
and positive feedback and that spurred me on. This isn’t bad at all. I
can do this. If they’re positive in their energy and the material they
give me, and it’s not the same thing every day. And it’s interesting. I
would never have thought of that. In the past I’ve done things I would
never have done. It made more sense so I think it’s, the therapists’
attitude and skills that helped me through and persist”(Harold, Study
1, 72, person with stroke related communication difficulties).
6 G. TERRY AND N. KAYES
It was common for patients to describe these sorts of effects,
speaking of drawing on the energy, and belief, and value the
practitioner invested into them. Similar to the effects described in
relation-inferred self-efficacy [49], confidence expressed in their
practitioner and their practitioner in them, enabled greater confi-
dence in themselves and their capabilities:
“I think it took it me a good twenty minutes to make one cup of tea
and she just sat there she said “take your time”and. “don’t rush it and
think about what you are doing”and that sort of thing and she would
use her own hand expressions like she’ll say “look at your hands and
open your fingers imagine opening your fingers and stuff like that and
grabbing a cup”and I’d sort of just watch her movements and my
hand moves with her sort of thing those sorts of things you know she
took the time to actually physically show me how I should hold a cup
and stuff like that um she’s got the patience there “hurry up, you’re
doing well, put your hand over here, do this”and she’s really quite
patient. I tend to think she is cos it took a good 20 minutes to just
make one cup and now I can probably do 5–7”(Elsa, Study 3, 50,
person with head injury).
Elsa’s account speaks to the intensiveness of supported effi-
cacy at various points, here it was described in terms closer to
new learning than relearning the task of tea-making. These sorts
of accounts did not suggest that growing independence was
taken off the table. There was still a focus on empowerment, and
increasing self-efficacy in daily living tasks within Elsa and other’s
stories. However, the recognition that this occurred within various
layers of relational dependence, and was not the goal of rehabili-
tation, was what stood out. In fact, a number of participants
spoke of having to rely more on their physiotherapists as their
condition improved, as a tendency to overextend
became common:
Sometimes my therapist said “look you are pushing too hard”because
he said it is not going to benefit you, it is going to make you tired.
And I have learnt, you know, it’s just a matter of “OK I am in your
hands and if you are saying I am going too hard, tell me how to go”?I
think that is pretty important.”(William, Study 1, 64, person with stroke
related communication difficulties).
It can be easy to see where such accounts might impact on
the decisional autonomy of a patient. However, in the interview
with William and others within the dataset, the description of
events was not one of withdrawal of autonomy, but where the
capacity to make good decisions was supported when the
tendency might be to “push too hard.”The difference between
decisions being made with or without the full involvement of cli-
ents was evident in their accounts. In the instances where sup-
ported efficacy was present, excitement and momentum were
often key features of their accounts. Myrtle for instance noted:
“I just know that when she turns up we’re going to be trying
something new and something that I know I’m gonna need when I get
home. So I look forward to those things, like even showering and stuff,
and she watches to see how I do it, so that if I need any adjustments
made at home, she can suggest those like handrails and I know that
every time she comes, I’m improving every day and she’s going to
teach me how to improve every day with every day things”(Myrtle,
Study 2, 52, person with head injury).
What was evident in this account is the ways in which even
the mundane became exciting –especially in the early stages of
her rehabilitation. Engagement in this account was viewed as a
product of the supportive relationship Myrtle had with her occu-
pational therapist, enabling her to gain a sense of progress in her
outcomes. Clearly the level to which this sort of support is appro-
priate will depend on the individual patient, and thus needs to be
a product of the relationship, and knowing the patient, rather
than protocol driven [53].
Supported efficacy was often implicit to the accounts of
patient participants. It was a feature of the data that tied closely
with a relational orientation to care, and the trusting relationships
clinicians build with their clients, but it was distinguished by its
emphasis on the tasks of rehabilitation, and the sense that partici-
pants felt enabled, enhanced, and wrapped around by clin-
ician care.
Discussion and conclusions
The secondary analysis described in this paper has explored the
sense-making of patients from several research projects, with the
themes described offering examples of person-centered care in
neurorehabilitation practice within the Aotearoa/New Zealand
context. The four themes we constructed from the data offer
insight into person-centredness, which surpass the original inten-
tion of the projects the data were drawn from. However, these
data provided a useful avenue to accessing positive accounts of
care within existing health systems and frameworks, generated
from the experiences of those who had experienced significant
injury or illness [54]. As these accounts were drawn from existing
cultures of care, they indicate that person-centered care is already
occurring (whether acknowledged or not) and understood, impli-
citly and explicitly, in patterned ways.
Some writers have already expressed concern about the trans-
ferability of ideas of person-centered care to the specific realm of
rehabilitation –especially when from other domains of healthcare
[55]. However, the findings of this paper indicate that, following
the principles of positive deviancy [24,56,57], solutions to the
‘problem’of increasing person-centredness in rehabilitation can
be found within existing systems. Particular, patterned types of
care were valued and experienced as meaningful by patients and
clinicians alike: (1) an understanding of the patient as located
within a difficult new reality; (2) a relational orientation to care;
(3) trust understood as an important form of currency; and, (4)
efficacy as co-constructed and enabled by the efforts of practi-
tioners. Together these themes served to describe an overall
orientation to care, not limited by various context bound under-
standings of the self and the capabilities of patients [5,58,59], nor
reduced to shared decision making or provision of information to
make informed choices [12,14,50]. This analysis benefitted from
access to a number of diverse projects with rich data from which
to select. It was limited by the explicit focus on neurorehabilita-
tion, however, these findings are highly transferable and
resonate with other areas of healthcare and rehabilitation
research [6,9,40,50].
These findings suggest that valued ways of working, particu-
larly beyond emergency care, began with the recognition of a
patients’new reality, and continued to centralize it throughout
rehabilitation. In this sense, clinicians acting as guides [46], and as
guests [18], in the lives of those experiencing new difficulty
appeared to be the most beneficial approach to care. Clinicians
who began with sensitivity, recognizing the long-term impact on
patients, not only of injury or illness, but also a widescale lack of
familiarity with the therapeutic landscape of hospitals and
rehabilitation, helped produce this guiding orientation [54].
However, clinicians are often not trained or supported in this area
to the same level as they are in biomedical models of care, des-
pite increasing evidence that guiding orientations benefit
patients, leading to better work satisfaction, outcomes, and qual-
ity of care [5,54]. Building upon solutions found within the system
such as this, and bolstering the types of care that are valued by
patients, seems to be one avenue to enhance patient experience.
PERSON CENTRED CARE IN NEUROREHABILITATION 7
Rather than viewing these expressions of care as additional, or
supplementary, these are behaviors that can be embedded into
the cultures of healthcare settings –with recognition these are
complex systems [5,6].
These are principles that can become embedded in the way
we do things, and equipping and training new people to do the
same –via curriculum adaptions and orientations, but also profes-
sional scopes and competencies. In practice, this may involve
teaching using models of reflexive praxis that responsively deal
with things like power difference, flexibility, defensiveness, and
change. It will also involve shifts in language and orientation.
For instance, interdependence rather than independence motifs,
recognizing interdependence is a typical and important feature of
all human experience, rather than something to be avoided [51].
It would involve movements away from the language of adher-
ence to recognizing engagement as a co-construction [44], espe-
cially given research evidence highlighting that return to
meaningful life is more important than physical ability for many
people experiencing the effects of neurological impairment [60].
Central to this engagement is the accumulation and maintenance
of trust. The metaphor of trust as currency relates to its protective
mechanisms within care, with depth of trust and quality of rela-
tionship strengthening clinician capacity to build patient capabil-
ities, and indeed the capacity to challenge patients when
appropriate [61,62].
Certainly, the more generative approach to care described in
our findings seems to rely less on exceptionalism, where practi-
tioners enact particular types of care despite the systems they
work within, and instead on developing cultures where the posi-
tive efforts of individual practitioners are supported and enabled
[6,54,63]. Such approaches mean there is less likely to be multiple
ideals of care competing within one another, diffusing the value
of each. Veneers of person-centered care were easily identified by
patients in the datasets analyzed and contrasted with more mean-
ingful engagement with the efforts of practitioners. Further,
patients in our data seemed well aware and sympathetic in
situations where a practitioner was “trying their best”, but were
stymied by expectations of practitioners’employers, time pres-
sures, or other systemic problems. Although there are clearly
examples where practitioners were not enacting the types of care
described in our themes, these examples often seemed to be
facilitated by, and equated with, systems that placed greater
weight on biomedical understanding and cost saving measures,
over and above the experience of patients.
Given claims that person-centredness is now in its ascendency,
we are well placed in research on person-centered care to see an
emphasis on identifying healthcare cultures where care and com-
passion are prioritized, and see translation of similar effects into
other contexts. Data that drills deeply into positive cultures of
healthcare should be prioritized over those identifying problems
with care, which now seem well rehearsed. Identifying avenues
that promote a greater critical reflection on practice, and the con-
text for care, and the extent to which that constrains or makes
possible person-centered care as described by our participants
may have much to offer the ongoing improvement of care
for patients.
Disclosure statement
The authors report no conflicts of interest.
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10 G. TERRY AND N. KAYES
