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Person centered care in neurorehabilitation: a secondary analysis



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 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. 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. • IMPLICATIONS 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.
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Disability and Rehabilitation
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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:
To link to this article:
© 2019 The Author(s). Published by Informa
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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
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.
Cultures of care are central to enhancing person-centered practice.
Care begins with recognition of patients difficult new reality.
Building trust helps enable capacity for improvement.
Received 18 March 2018
Revised 5 November 2018
Accepted 18 December 2018
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 [14]
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
carecan end up being associated with metrics and box ticking
activities [17].Theymayalsoimplicitlyrelyonthewillingnessof
clinical staff to engage in above and beyondactivities 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 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.
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any way.
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 societymeans 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 peoples
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 worksmight 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.
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 Centres 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 Centres existing datasets and research portfolio
to gain a wider insight into how person-centered care might be
enacted in practice.
Following Heatons[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 Centres 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.
We used thematic analysis following Braun and Clarkes[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
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 participantsare 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].
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 theres all this danger, you know, you dont 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 patients 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 landscapeoften 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 wasnt 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 wasnt until I got back onto the internet and
started reading about other peoples 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
Josephs 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, Hells
teeth were on a different page hereand 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 practitioners 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:
Im not a person to sit around and do nothing. This has been a hell of
a shock because Ive always worked with my hands and doing things.
So, suddenly boom, you know, cant do it anymore, because when I
first went to hospital, like I was carried in. Couldnt walk. Couldnt talk.
Couldnt go to the bathroom. Couldnt 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
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, its
going to be wonderful.You get home and then theres 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 hes lost peripheral vision and that as well and depth theres
that little step he kept. So theres all this danger you know, you dont
sort of realise until you get home. And then if you have got nobody
there to support, to sort of like turn to its a nightmare(Anna, Study 3,
Parent of child with head injury).
Similar to Annasnightmare, metaphorical language such as
new terrain,a whole different worldpervaded 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
patients 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 Ive only known them all of two weeks but
youd swear Id 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 successwith 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
wasnt much emotional buy-in. There was no real relationship. Maybe
because they had so many people coming through, they just, they
havent got time. I think if you dont bond to your PT, to your therapist
you know, you dont get as much as you should out of it. If theyre
aware when you walk in tired or youre down(Andrew, Study 2, 52,
person post-stroke).
The need to have a real relationshipwith 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 bondwas 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 youve got consultants
coming around youve got the doctors coming around. They will
invariably say Ive got other patients to seeand you feel like saying
dont forget Im 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,orevidenceas
doing the work of rehabilitation (see Kayes et al. [42], for critique
of this sort of account). Where expertiseand 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 its the caring and the, yes thats it. It made me feel good. I sort
of felt oh my god Ive 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 toand all this and I felt good, I thought I wasnt
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 youve 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 caseby 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
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:
Its all about making you feel interested that, or youre wanted, if you
know what I mean? If youre just a therapist talking to me and you got
no, ahhh youre pretty low key, and its just a job for you, its going to
make life a lot difficult for me personally. But in that the people here
they treat you as a family member really its quite good quite nice
(Sam, Study 3, 25, person with head injury).
Being low keyor simply relying on expertise over relation-
ship (e.g., its 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 its just
the way she. It was just her mannerisms I suppose. I dont know
whether its 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 dutyof care. Second, a willingness to engage
with the person as a person, irrespective of whether outcomes
follow a normativepathway 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 its 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 trusts protective
effects, and its ability to purchasehope 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 whats going on with me, physically. If I have issues, posture,
Im 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 upover time was often deployed by partici-
pants, and in Nigels 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 Ive 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 its 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
patients 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 Im the doctorpretty much. And then I was just like,
oh yeah I just dont 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 shouldnt be like that. Like my dad is
an accountant and I dont see how its any different from an
accountant. Like if he was to treat his clients like that or if he was rude
or he didnt listen or he was like, it just wouldnt 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
ease, or making them feel relaxed, with participants identifying
the ways this might occur:
You know about them. They know about you. Youve 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, theyve done this,
this is their training, theyve been here so many years. Theyve 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
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 dont know if its 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 wasnt just going
into a place that completely didnt 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 trustwas con-
sidered a mitigating effect throughout care. Those clinicians that
went outside usual practiceand 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 patients care. Sams 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 patients 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 patients
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
havent got one Ill make itsort of thing, I am always fixing things and
I recognised quite early on that this was something I wasnt 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, Johnnies 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 dont 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 patients capacities to improve [52], most
patients spoke of the opposite effect in their lives. Harold, for
instance, spoke of his therapists 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 wasnt 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 isnt bad at all. I
can do this. If theyre positive in their energy and the material they
give me, and its not the same thing every day. And its interesting. I
would never have thought of that. In the past Ive done things I would
never have done. It made more sense so I think its, the therapists
attitude and skills that helped me through and persist(Harold, Study
1, 72, person with stroke related communication difficulties).
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 timeand. dont rush it and
think about what you are doingand that sort of thing and she would
use her own hand expressions like shell say look at your hands and
open your fingers imagine opening your fingers and stuff like that and
grabbing a cupand Id 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 shes got the patience there hurry up, youre
doing well, put your hand over here, do thisand shes 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 57(Elsa, Study 3, 50,
person with head injury).
Elsas 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 others
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 hardbecause
he said it is not going to benefit you, it is going to make you tired.
And I have learnt, you know, its 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 were going to be trying
something new and something that I know Im 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, Im improving every day and shes 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
problemof 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
patientsnew 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.
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 practitionersemployers, 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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... Person-centred care (PCC) has gained importance in the context of clinical care over the past few decades [1,2], although certain difficulties still exist in terms of its integration into health systems [3]. Thus, the World Health Organisation considers the humanization of health care and the development of person-centred health systems as key aspects at the core of health care [1], which are fundamental for improving the experience of patients in terms of their care [3]. ...
... Person-centred care (PCC) has gained importance in the context of clinical care over the past few decades [1,2], although certain difficulties still exist in terms of its integration into health systems [3]. Thus, the World Health Organisation considers the humanization of health care and the development of person-centred health systems as key aspects at the core of health care [1], which are fundamental for improving the experience of patients in terms of their care [3]. ...
... Despite the growing interest in PCC, there is still no consensus for its definition [3,11] and which factors are decisive for the application of this model in clinical practice [11]. Thus, PPC is characterized by four dimensions [12]; the first is based on the biopsychosocial perspective, considering the person as a whole, focussing on the intimacy, spirituality or beliefs of the sick person; the second describes the sharing of responsibility and power, which includes the decision-making capacity of the person cared for and autonomy, finding common ground in clinical care; the third, treating the individual as a person, including both the disease and the experience of the disease; finally, the fourth describes the strengthening of the therapeutic alliance through the person-physician relationship. ...
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Background Person-centred care (PCC) has considerable effects on the clinical practice of health professionals. The purpose of this study was to describe the perspectives and perceived barriers and enablers of individuals with stroke regarding the PCC model in stroke rehabilitation. Methods A qualitative exploratory study was conducted based on an interpretive framework. Participants were recruited using non-probabilistic purposeful sampling and a snowball-technique strategy. The inclusion criteria consisted of: (a) individuals > 18 years, (b) diagnosed with moderate or severe stroke according to the National Institutes of Health Stroke Scale and (c) in the post-acute or chronic stage of the disease. In total, 31 individuals with stroke were included. In-depth interviews and researchers’ field notes were used to collect the data. A thematic analysis was performed. Also, credibility, transferability, dependability and confirmability techniques were followed to establish trustworthiness of the data. Results Thirty-one individuals with stroke (11 women) were included. Three main themes were identified: (a) The person behind the “patient” label, recognizing the person beyond their illness and valuing their identity and individual characteristics, (b) The person at the centre of care, considering themselves as an active agent in their own care and respecting their preferences and expectations for their care process and (c) Training for PCC, providing health professionals with tools to achieve professional skills for the implementation and development of the PCC model. Conclusions and significance This paper describes relevant aspects that health professionals should consider when providing PCC in the context of the rehabilitation of individuals with stroke. • Key messages • The individuals’ perspective regarding person-centred care (PCC) has considerable effects on the clinical practice of health professionals. • Individuals with stroke describe how there is a person behind the "patient" label, with identity, needs and desire to participate in decision making. • Training in the PCC model helps healthcare professionals identify the needs of individuals with stroke during rehabilitation.
... • Person-centred care is a multidimensional concept, capturing various meanings related to who the care-user is, what care is needed, and different understandings of care-user capabilities. Terry and Kayes (2019) defined four themes for personcentred care in neurorehabilitation: 1) care-users experience should be understood in terms of a different new reality, 2) the need for a relational orientation, 3) the importance of trust, and 4) professional and care-user together co-construct efficacy. ...
... • The attitude of the professional is an important starting point for person-centred care, which means creating room, building a relationship, facilitating agency and participation, committing to inclusion and citizenship, being strengths/capacity focused, and acknowledging the person 'behind' the disability (Waters & Buchanan 2017). • In the process of person-centred care care-users and professionals work together as partners and connect their specific types of knowledge, i.e., scientific knowledge, professional knowledge and experiential knowledge (Terry & Kayes 2019). A dynamic, responsive and flexible way of working is key (Waters & Buchanan 2017). ...
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Inclusion is an important topic in today’s society, yet it is surrounded by confusion and is difficult to attain in reality. This paper aims to critically appraise the concept of inclusion, to reflect on the essence of what inclusion in society is about, and to translate this essence into user involvement in small-scale, long-term care practices for people with disabilities. Most professionals in care services find user involvement important, and user involvement has shifted expectations and broadened the roles of clients in health care, but real partnerships remain difficult to achieve. In this paper, we try to understand why this is the case and what can be done about it. To this end, we reflect on the mechanisms underlying the difficulties in realising partnerships in everyday care practices and portray two long-term care practices in which the professionals and care users work in partnership. Finally, we draw conclusions about the factors underlying these practices in the context of inclusion.
... They noted how building team relationships happened over time and was something that happened naturally rather than forced by management. Research in a variety of health professional contexts has identified that giving something of your personal self to your team increases the levels of trust [30][31][32]. ...
... Terry and Kayes [31] research went further to suggest that those professionals who relied on their professional expertise and status, rather than relationship building, created distrust with the client. In the data from our study, the two professional groups of physiotherapists and OTs felt that they interacted more with each other than with other disciplines and often described working across roles. ...
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Purpose Vocational rehabilitation (VR) involves complex skills, and often inter-disciplinary teams need to work effectively to meet the needs of stakeholders. Research highlights important influences on effective teamwork, including funding systems, team structure, policies and procedures, and effects of professional hierarchies. This qualitative study aimed to explore these issues in-depth including how factors interact to produce problems and solutions. We focused on identifying challenges and opportunities for VR teams working in the Aotearoa-New Zealand context which may also be transferrable to other settings. Methods Qualitative descriptive instrumental case study involving focus groups and interviews with two VR teams (n = 14). Teams worked in musculoskeletal injury and were geographically diverse. Reflexive thematic analysis was used to analyse the data. Results Analysis constructed three overarching themes: Having the Power, Being Human, and VR is Not for Everyone. Achieving trusting relationships within the team was paramount. This was achieved through seeing everyone as equal, and as human. Equality within the team was particularly important for professionals that occupied different positions of power in a wider professional hierarchy. VR specialist skills (experience and postgraduate qualifications) were often under-recognised, leading them to have little power in VR decision making processes. VR professionals also experienced competing demands between client needs and business drivers. Conclusion Findings offer detail of processes teams engage in to create effective team relationships and manage systemic factors to facilitate positive outcomes. Additionally, findings highlight opportunities in decision-making processes for VR medical certification that may increase job satisfaction and better utilize skills and expertise.
... So, um, there are different doctors with different attitudes… [My new doctor] listens to me and it's, so I'm grateful that I've found other people that can hear what you're saying and not just writing it down on a piece of paper and giving you a pill every time, you know what I mean?The importance of meaningful healthcare relationships has also been emphasised in previous Māori health research (B. J.. These insights resonate with broader research on person centred care, which highlights the need for a reorientation to cultures of care; moving beyond the efforts of individual healthcare practitioners(Terry & Kayes, 2020). ...
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Background: Chronic pain/mamae is a major public health problem worldwide, and disproportionately affects indigenous populations impacted by colonisation. In Aotearoa New Zealand, indigenous Māori experience a greater burden of chronic pain than non-Maori. However, pain services based on Western models are unlikely to meet the needs of indigenous peoples well. Little is published about traditional Māori views of, or approaches to, managing mamae/pain, knowledge that is traditionally held by kaumātua/elders. This study therefore aimed to understand kaumātua (Māori elder) views on the effects of pain, traditional pain management practices, and mātauranga (Māori knowledge) relating to managing pain. Methods: 14 kaumātua participated in interviews or a hui/focus group. Methods honoured tikanga (Māori protocol) and centralised whanaungatanga (relationships). Interviews and the hui/focus group were transcribed, and reflexive thematic analysis was conducted. Results: Three themes were developed: 1. The Multidimensional Aspects of Pain: Pain stretched beyond the physical and encompassed emotional and mental trauma, wairua/spiritual pain, grief from the loss of loved ones, contamination of the environment or breaches of tikanga/protocol. Some mamae/pain was described as everlasting, passing between people or generations. 2.Whakawhanaungatanga/Relationships: Healing through Connection. Healing of pain was seen to occur through strengthening connections with people, the spiritual realm, the natural world, and with papakāinga (one’s ancestral homeland). 3.Tino Rangatiratanga/Self-determination: Strength to Self-Manage Pain. Self-reliance to manage pain and self-determination to make health decisions were critical, and a stoical approach to pain was described. Stoicism was noted to avoid perceptions of weakness and burdening whānau/family, but may inhibit emotional expression, connection and healing. Conclusions: Mātauranga/Māori knowledge emphasises that pain and its healing should be considered multidimensional, incorporating physical, mental, and relational components, existing in the spiritual realm and incorporating links between people, places, the past and future. Individuals may approach pain with a stoical approach, which may have both positive and negative features. Pain services may wish to incorporate this knowledge of the spiritual, social and psychological aspects of pain and pain management to provide more meaningful care for people with pain.
... Personcentered care is recognized in healthcare delivery but remains challenging to operationalize (61). Further, part of this approach in neurorehabilitation requires the realization of patients' new realities and the ability to target essential adaptation practices throughout rehabilitation (62). As such, sex-and gender-sensitive care (63, 64) may be incorporated within the person-centered care paradigm. ...
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Background: Traumatic brain injury (TBI) outcomes are dependent on patients' biological sex (e.g., hormone levels) and sociocultural gender (e.g., norms, responsibilities). Informal caregivers additionally experience disruptions to identity and roles post-TBI. However, information on this topic remains largely unavailable to patients and caregivers. Purpose: This study aimed to determine the effectiveness of a one-time educational intervention on sex and gender influences in TBI for patients and informal caregivers. Materials and methods: We conducted a pilot pre-test/post-test randomized control-group design study. Groups (i.e., passive, active and control) consisted a total of 16 persons with TBI and caregivers (75% persons with TBI, 63% women). Individual and group learning gains, and group-average normalized gain, were computed for three learning domains: knowledge, attitude, and skill. An intervention with an average normalized gain of ≥30% was considered effective. Educational intervention evaluation and qualitative comments post-participation were summarized. Results: The passive group demonstrated the highest average normalized gain across the three learning domains, including 100% for knowledge, 40% and 61% for attitude, and 37% for skill. The remaining groups did not reach an average normalized gain of ≥30%, except for the attitude domain of the control group (33% and 32%). Two key categories were identified qualitatively: (1) gendered self-expectations post-injury and (2) implications of gender stereotypes in rehabilitation, including the need for rehabilitation treatment to look beyond sex and gender. The post-participation educational session evaluation conveyed high appraisal of content, organization, and usability of the intervention. Conclusion: A one-time passive educational intervention on sex and gender in TBI may improve knowledge, attitude, and skill on the topic of sex and gender among adults with TBI and caregivers. Obtaining knowledge and skill on sex and gender effects in TBI can potentially help persons with TBI and caregivers adapt to changes in roles and behaviours post-injury.
... Our reflections in this paper come from our own research 6,7,[9][10][11][12][13][14][15][16] and by listening to the experiences of people and families accessing rehabilitation and their practitioners. At a theoretical level, we are inspired by a field called critical rehabilitation studies. ...
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Objectives: To (1) reflect on challenges to the practice of person-centred rehabilitation; and (2) propose opportunities for the development of person-centred rehabilitation. Challenges: Person-centred practice has received widespread endorsement across healthcare settings and is understood to be an important, positive approach in rehabilitation. However, the rhetoric of this approach does not always translate meaningfully into practice. Emphasis on patient choice, patient involvement in decision making, and increasing patient capacity for self-management have become a proxy for person-centred rehabilitation in lieu of a more fundamental shift in practice and healthcare structures. System (e.g. biomedical orientation), organisational (e.g. key performance indicators) and professional (e.g. identity as expert) factors compete with person-centred rehabilitation. Opportunities: Four key recommendations for the development of person-centred rehabilitation are proposed including to: (1) develop a principles-based approach to person-centred rehabilitation; (2) move away from the dichotomy of person-centred (or not) rehabilitation; (3) build person-centred cultures of care in rehabilitation; and (4) learn from diverse perspectives of person-centred rehabilitation. Conclusion: Fixed assumptions about what constitutes person-centred rehabilitation may limit our ability to respond to the needs of persons and families. Embedding person-centred ways of working is challenging due to the competing drivers and interests of healthcare systems and organisations. A principles-based approach, enabled by person-centred cultures of care, may achieve the aspirations of person-centred rehabilitation.
... 23 Terry and Kayes, looking across patient and provider qualitative data from three studies, identified four essential features: focusing on patients' experience and needs given the difficult new reality of living with the effects of stroke; relational care as the basis of therapy and; supportive promotion of autonomy. 24 Terry and Kayes noted that these features were put into practice despite restrictions within the systems practitioners were working. While it may be possible to introduce such care without administrative support, sustainability may be difficult. ...
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Objective: The objective of this study was to identify essential aspects of exemplary post-discharge stroke rehabilitation as perceived by patients, care partners, rehabilitation providers, and administrators. Design: We carried out an exploratory qualitative, multiple case study. Stroke network representatives from four regions of the province of Ontario, Canada each nominated one post-discharge rehabilitation program they felt was exemplary. Setting: The programs included: a mixed home- and clinic-based service; a home-based service; a clinic-based service with a stroke community navigator and; an out-patient clinic-based service. Participants: Participants included 32 patients, 16 of their care partners, 23 providers, and 5 administrators. Methods: We carried out semi-structured qualitative interviews with patients and care partners, focus groups with providers, and semi-structured interviews with administrators. Health records of patient participants were reviewed. Using an interpretivist-informed inductive content analysis, we developed overarching categories and subcategories first for each program and then across programs. Results: Across four regions with differing types of programs, exemplary care was characterized by three essential components: stroke and stroke rehabilitation knowledge, relationship built through personalized respectful care, and a commitment to high quality, person-centered care. Conclusion: Exemplary post-discharge care included knowledge regarding identification and treatment of stroke-related impairment, that is, information found in best practice guidelines. However, expertise related to building relationship through providing personalized respectful care, within a mutually supportive, improvement-oriented team was also essential. Additionally, administrators played a crucial role in ensuring continued ability to deliver exemplary care.
... Furthermore, there are calls to re-frame practice from a dichotomous perspective of either biomedical or person-centred and embrace practice as being on a continuum [53,54]. If a continuum approach were adopted for each construct, then it could empower physiotherapists to edge closer to aspects of person-centred practice which are within their scope to influence. ...
Background There is a growing call for healthcare to focus on person-centred practice. This can lead to improved outcomes for patients in terms of physical and psychological health. Challenges exist around how person-centredness is understood in physiotherapy. Having a physiotherapy framework would help support a shared understanding of the meaning of person-centred physiotherapy. Aim The aim of this study was to locate and synthesise studies which have a conceptualisation of person-centred physiotherapy practice. These were used to develop an overarching conceptual framework for person-centred physiotherapy practice. Methods The framework was developed through a systematic process involving a systematic literature search, screening studies against eligibility criteria, data extraction, data synthesis, naming and defining core constructs of person-centred physiotherapy practice, and generation of a pictorial representation of an overarching conceptual framework. Results The person-centred physiotherapy framework is comprised of four constructs: physiotherapist characteristics, which focuses on the knowledge and skills for clinical proficiency, attributes of the physiotherapist, reflection and self-awareness; person-physiotherapist interaction(s), which focuses on partnership, empowerment and self-management; the environment, which focuses on coordinated healthcare delivery, culture of the organisation and practice environment, and the physical environment; and the ongoing unique journey of the person and self-management. The relationships between the constructs reflect the complex nature of person-centred practice. Conclusions The framework presented can be used to better understand person-centred physiotherapy with a view to enhancing practice. The framework needs to be tested further through empirical research to establish its utility.
Purpose: Stroke survivors regularly report experiencing boredom during inpatient rehabilitation which may detrimentally affect mood, learning and engagement in activities important for functional recovery. This study explores how stroke survivors meaningfully occupy their non-therapy time and their experiences of boredom, to further our understanding of this complex phenomenon. Methods: Secondary analysis of transcripts from semi-structured interviews with stroke survivors exploring activity during non-therapy time. Transcripts were coded and analysed using a hybrid approach of inductive and deductive thematic analysis, guided by a published boredom framework. Results: Analysis of 58 interviews of 36 males and 22 females, median age 70 years, revealed four main themes: (i) Resting during non-therapy time is valued, (ii) Managing "wasted" time, (iii) Meaningful environments support autonomy and restore a sense of normality, and (iv) Wired to be social. Whilst limited therapy, social opportunities and having "nothing to do" were common experiences, those individuals who felt in control and responsible for driving their own stroke recovery tended to report less boredom during their rehabilitation stay. Conclusion: Creating rehabilitation environments that support autonomy, socialisation and opportunities to participate in activity are clear targets to reduce boredom during non-therapy time, increase meaningful engagement and possibly improve rehabilitation outcomes post-stroke.
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Purpose The purpose of this study was to inspect and establish the factor structure of the Icelandic Client-Centred Rehabilitation Questionnaire [CCRQ-is] and investigate the service experiences of a large and varied sample of rehabilitation users. Materials and methods Altogether 499 rehabilitation users completed the questionnaire. Confirmatory and exploratory factor analysis was conducted for analysis of items. Mann-Whitney’s U and Kruskal-Wallis test was used to compare subscale responses based on participants’ characteristics. Results Four factors explained 53,2% of the variance: Respect and attentiveness, Interaction with significant others, Responsiveness to needs and preferences and Education and enablement. Subscales showed internal consistency from 0.72–0.91 and 0.92 for the whole instrument. The subscale Respect and attentiveness represented user centred rehabilitation the most and Interaction with significant others the least. Significant differences in relation to health conditions and age were obtained on all four subscales and differences by gender on one subscale. Conclusions Our results suggest the CCRQ-is is a reliable tool that can be used with rehabilitation users with a broad range of characteristics within the Icelandic context. The extent to which the intersection of age, gender and health issues influence users’ perception of services needs to be further scrutinized.
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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 article, we discuss and critically reflect upon one such alternative Healthcare model developed at the University of Gothenburg Centre for Person-Centred Care 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 expression and willing to provide clear and genuine narratives and cooperate with Healthcare professionals. However, we argue that by emphasizing 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 Gothenburg Centre for Person-Centred Care 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 person-centred care’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 person-centred care into practice.
This qualitative descriptive study explored cancer survivors' experiences of barriers and facilitators to undertaking physical activity to inform how services and professionals might offer better support. Purposive and theoretical sampling was used to recruit 25 people who were up to 5 years post-cancer diagnosis. Participants took part in face to face, semi-structured interviews, and transcripts were analysed using thematic analysis. The analysis identified five interrelated themes which represented cancer survivors' views: 1) You're on your own–a sense of abandonment post-treatment, and lack of sufficient and tailored information; 2) Dis-ease–disruption to self and identity, and a heightened awareness of physical self and fragility; 3) Becoming acclimatised–physical activity in the face of treatment-related side effects and residual impairment; 4) Importance of others–encouragement and support from health professionals, family and friends, and cancer-specific exercise groups; 5) Meanings people ascribed to physical activity—these were central and could help or hinder engagement. Our findings suggest being able to live well and re-engage in meaningful activities following a diagnosis of cancer is both complex and challenging. There appear to be gaps in current service provision in supporting the broader health and well-being of cancer survivors.
Objective: To provide practical tips for health services researchers considering the use of positive deviance (PD) methods to help explain variations in quality of care or other meaningful parameters. Data sources: Published literature and personal experience. Study design: Narrative review. Principal findings: This review includes a discussion of possible applications of PD to health services research, some methodological choices applicable to PD, and some brief tips regarding publishing the results and incorporating them into future interventions. Conclusions: It is hoped that this article will help health services researchers to use this valuable research method more effectively, especially those who have not done so before.