Patient participation-18 months of patient and staff perspectives in kidney care: A mixed methods study addressing the effects of facilitating staff person-centredness

Abstract

Rationale
Patient participation should encapsulate the individual's resources and needs, though such standards remain rationed for people living with a long‐term health concern like kidney failure.

Aims
To illustrate what patient participation signified to patients and staff in kidney care, and whether an agreed or disagreed conceptualisation occurred over time, evaluating the influence of two study‐specific interventions to facilitate more person‐centred participation.

Method
By convergent mixed methods design across 9 units in Sweden, we repeated the following data collection at 3 time points over 18 months: semistructured interviews with patients and staff ( n = 72), and structured reviews for accounts of participation in patient records ( n = 240). Data were subjected to content analysis and descriptive statistics, respectively. The outcomes were appraised for changes over time besides the interventions to enhance attention to patients' participation: a clinical tool and guidance distributed to management, and additional local support, respectively.

Results
Both patients and staff described patient participation as a comprehension of the disease and its management in everyday life. Yet, patients accentuated participation as one's experiences being recognised, and mutual knowledge exchange. Instead, staff emphasised the patients managing their treatment. The health records primarily represented what staff do to support their notion of patient participation. No influence of the interventions was noted, but what signified patient participation was maintained over time.

Conclusion
Both patients and staff stress the importance of patient participation, although they focus on different elements. Further person‐centred conduct warrants a shared conceptualisation and strategies addressing and scaffolding patients' preferences and means.

Full text

Received: 18 July 2023
|
Revised: 30 June 2024
|
Accepted: 8 July 2024
DOI: 10.1111/jep.14099
ORIGINAL PAPER
Patient participation—18 months of patient and staff
perspectives in kidney care: A mixed methods study
addressing the effects of facilitating staff
person‐centredness
Caroline Hurtig RN, MSc, PhD
1
|Liselott Årestedt RN, PhD
2
|
Fredrik Uhlin RN, PhD
1,3,4
|Ann Catrine Eldh RN, MSSc, PhD
1,5
1
Department of Health, Medicine, and Caring
Sciences, Linköping University, Linköping,
Sweden
2
Department of Health and Caring Sciences,
Linnaeus University, Kalmar, Sweden
3
Department of Nephrology, Region
Östergötland, Linköping, Sweden
4
Department of Health Technologies, Tallinn
University of Technology, Tallinn, Estonia
5
Department of Public Health and Caring
Sciences, Uppsala University, Uppsala,
Sweden
Correspondence
Ann Catrine Eldh, RN, MSSc, PhD,
Department of Health, Medicine, and Caring
Sciences, Linköping University, Linköping
SE‐581 83, Sweden.
Email: ann.catrine.eldh@liu.se
Funding information
Forskningsrådet i Sydöstra Sverige; Swedish
Kidney Foundation; Region Östergötland
Abstract
Rationale: Patient participation should encapsulate the individual's resources and
needs, though such standards remain rationed for people living with a long‐term
health concern like kidney failure.
Aims: To illustrate what patient participation signified to patients and staff in kidney
care, and whether an agreed or disagreed conceptualisation occurred over time,
evaluating the influence of two study‐specific interventions to facilitate more
person‐centred participation.
Method: By convergent mixed methods design across 9 units in Sweden, we
repeated the following data collection at 3 time points over 18 months:
semistructured interviews with patients and staff (n= 72), and structured reviews
for accounts of participation in patient records (n= 240). Data were subjected to
content analysis and descriptive statistics, respectively. The outcomes were
appraised for changes over time besides the interventions to enhance attention to
patients' participation: a clinical tool and guidance distributed to management, and
additional local support, respectively.
Results: Both patients and staff described patient participation as a comprehension
of the disease and its management in everyday life. Yet, patients accentuated
participation as one's experiences being recognised, and mutual knowledge
exchange. Instead, staff emphasised the patients managing their treatment. The
health records primarily represented what staff do to support their notion of patient
participation. No influence of the interventions was noted, but what signified patient
participation was maintained over time.
Conclusion: Both patients and staff stress the importance of patient participation,
although they focus on different elements. Further person‐centred conduct warrants
J Eval Clin Pract. 2025;31:e14099. wileyonlinelibrary.com/journal/jep
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https://doi.org/10.1111/jep.14099
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© 2024 The Author(s). Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.

a shared conceptualisation and strategies addressing and scaffolding patients'
preferences and means.
KEYWORDS
chronic kidney disease, long‐term condition, mixed methods, patient participation, person‐
centredness
1|INTRODUCTION
While participation signifies an individual's commitment to their life
situation,
1
patient participation embodies the person's engagement in
their health and health care. Patient participation is widely endorsed, and
is associated with positive effects on both healthcare quality and patient
outcomes.
2,3
Although addressed as a core healthcare value, current
services fail to fully enable patient participation as including a recognition
of patient preferences and experiences in a co‐productive manner.
4
A
significant barrier is the lack of a shared understanding of what
constitutes ‘patient participation’.
5
To date, engagement, involvement
and participation are terms used interchangeably to represent the mutual
exchange for the benefit of individuals enacting a patient role; the core
component of such participation is sharing of information, knowledge,
and experiences, and sharing in health‐related activities (including
healthcare plans, goals, and decisions, the management of prescribed
treatment, and self‐care).
6
Prior studies strongly advocate the sharing
elements to represent patient participation.
7,8
Still, authentic patient
participation also necessitates person‐centred care, including, for
example, a recognition of the experiences and priorities of the individual.
9
Rather, it is vital to recognise the patient's resources and needs to enable
preference‐based participation in one's health and healthcare
interactions.
10
Such patient participation is imperative for individuals living with
long‐term conditions,
11,12
who, because of their health status, are
both expected to and often capable of participating in their health
and health care.
3
In prior and current studies, we have addressed
patient participation in the care of people with chronic kidney disease
(CKD).
5,10,13
Globally, CKD affects approximately 700 million
people,
14
engaging numerous individuals in their self‐care and
treatment management. For all CKD patients, it is essential to
recognise and act on everyday health issues such as fluid and diet
restrictions, and being physically active,
15
representing participation
in their health and health care around the clock.
In previous studies, we found patient participation to vary in the CKD
healthcare context,
10
including a divergence regarding what aspects of
patient participation are in focus for patients and staff; both a lack of a
common understanding of what participation represents, and missed
opportunities to focus on patient‐centred care was noted.
5
With only
~50% of CKD patients having experienced participation matching their
preferences (i.e., addressing their resources and needs),
10
we suggested
interventions to facilitate preference‐based patient participation. In
correspondence with the renowned framework for integrated Promoting
Action on Research Implementation in Health Services (i‐PARIHS),
16
two
levels of support were promoted, addressing management only, or
management plus local nurses assigned to facilitate a more person‐
centred approach to patient participation; that is, to advance their support
of patients with CKD to engage in their care and treatment, in consensus
with their resources and needs. A process evaluation of the adoption and
reach of the interventions is reported separately, along with its effects on
patients' preference‐based participation.
17
With no statistical evidence of
more person‐centred opportunities for their participation, we tailed the
conceptualisation and realisation of patient participation with patients and
stafftoevaluatetheinfluence(ornot)attheclinicalpracticelevel.
1.1 |Aim
The aim of this paper was to illustrate what patient participation
signified to patients and staff in kidney care, and whether an agreed
or disagreed conceptualisation occurred over time, evaluating the
influence of two study‐specific interventions to facilitate more
person‐centred participation.
2|METHODOLOGY
The study dispatches patient and staff conceptualisations of patient
participation, and accounts of patient participation in patients'
electronic records.
2.1 |Study design
A mixed methods convergent design.
18
2.2 |Setting
A total of 9 out of 11 kidney care sites eligible across southeast
Sweden agreed to participate in the study, representing university,
regional and local hospitals (coded A–I to maintain confidentiality).
For the two strategies intended to augment patient participation,
we organised the nine sites into three groups (of three sites each).
We allocated the sites with respect to type of hospital, and to any
prior engagement in the pilot study
5,13
for best possible correspon-
dence to context across groups. To prevent bias during data
collection and initial analysis, the first author performing the data
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collection was blinded to the allocation; this was disclosed in the final
step of the analysis, as described below.
2.3 |Interventions
The three sites in the control group (CG) had no support
for facilitating implementation of more person‐centred patient
participation. Rather, the two intervention groups with three sites
each had some and more extensive support, respectively:
−The standard dissemination group (SDG) received support for
management to prompt more person‐centred conduct for
patient participation. This comprised the project team's
dissemination of tailored instructions and a tool for clinical
use and evaluation (from here on called ‘the package’,outlined
in Figure 1).Thepackagewassenttothefirstline(nursing)
manager and the head of unit (medical officer) at each SDG,
via e‐mail, and included a cover letter clarifying the tool's
purpose and content, and emphasising that further dissemina-
tion of the material was up to them. The package was sent on a
set date to all SDG sites, in October 2019 (after baseline data
collection).
−The facilitated implementation group (FIG). This group experi-
enced the same dissemination of the package as the SDGs to the
first line manager and head of unit for each FIG site, on the same
date as the SGDs. Before this, they had been asked to assign
at least two local nursing staff to act as internal facilitators (IFs).
In total, five IFs (two, two and one for each site) were appointed
andjoinedthe6‐month intervention programme, summarised in
Figure 2.
FIGURE 1 The package disseminated as part of the intervention,
to standard dissemination group (SDG) sites, and to the facilitated
implementation group (FIG) sites.
FIGURE 2 The programme offered the internal facilitators in the facilitated implementation group (FIG) sites.
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2.4 |Study participants and recruitment
For this study, participants represented a cohort of CKD patients and
staff across the nine kidney sites.
2.4.1 |Patients
Eligible patients were identified in mid‐2019byacontactpersonineach
of the kidney care sites (a first line manager or a research assistant
nurse). Criteria for inclusion were patients>18yearsofage,diagnosed
with stage IV or V CKD (i.e., estimated glomerular filtration rate of
<29 mL/min)
19
who were able to communicate in Swedish and were not
suffering from cognitive dysfunction. After collecting the contact details
of prospective study candidates, the research team sent them a letter
via regular post, or the contact person at each site delivered the same
written information to each candidate. Their response was sent to the
first author, including their informed consent or decline. In total, 358
patients gave written informed consent to participate in the research
project, including the completion of surveys and potential interviews. Of
these, 240 patients also consented to admission of their medical record
for details on their participation (see demographics in Table 1).
For individual interviews, 19 patients across the 9 sites were
strategically selected, ensuring a variation in sex, age, predialysis
phase or dialysis care, and years in kidney care (Table 2).
2.4.2 |Healthcare staff
Staff were informed about the study and recruited by their managers,
a research assistant at the site, or by the first author at a workplace
meeting, through work‐related e‐mail, or by sending information to
their home address. Staff on leave of absence, parental leave, or long‐
term sick leave were excluded. Staff invited by the first author (C. H.)
received two reminders at 3–4 week intervals; staff invited by their
manager, or a contact person were nudged using oral reminders.
We drew a strategic sample of 17 professionals out of the 105
staff who agreed to participate, ensuring all kidney sites were
represented; demographics of the participants are listed in Table 2.
2.5 |Data collection
Three data sets were collected for this study:
−Two qualitative data sets comprised of individual, semistructured
interviews on two separate occasions: October–December 2019
(baseline), and April–May 2020 (post‐intervention).
−One quantitative data set collected at three time points via a
structured review of patient records at July–October 2019 (baseline),
October–January, 2020 (6 months after the FIG intervention) and
April–July, 2021 (12 months after the FIG intervention).
2.5.1 |The interviews
All interviews encompassed the same open‐ended questions, inviting
the interviewee to: describe what patient participation is, situations
when patient participation had occurred and what signified such
encounters. No definition of patient participation was provided, but
interviewees were encouraged to reflect on their own understanding
TABLE 1 Overview of demographic of patients in electronical records.
n(%) Age: min–max, median Men, n(%) Women, n(%) pValue
All records 240 (100) 27–93, 70 150 (62.5) 90 (37.5) 0.764
In kidney replacement therapy (KRT) care 128 (53) 28–93, 69 79 49 0.894
In pre/post KRT care 112 (46.5) 27–88, 70 71 41
In control group sites 56 (23) 27–93, 70 39 17 0.704
In SDG sites 50 (21) 28–83, 68 29 21
In FIG sites 134 (55) 34–88, 70 82 52
Note:pValues are based on the Kruskal–Wallis test. Significance value p= 0.05.
Abbreviations: CG, control group; FIG, facilitated implementation group; SDG, standard dissemination group.
TABLE 2 Overview of participant demographics in interviews.
Age: n(min–max, median) Men (n) Women (n)
Patients
In KRT care 19 (54–83, 70) 5 5
In pre/post
KRT care
27
Healthcare staff
Physicians 17 (31–64, 52) 1 1
Nurses 1 14
Position In KRT care 15
In pre/post KRT care 2
Note: Distribution of interviewees across the intervention groups: (I) SDG:
six patients and five staff; (II) FIG: six patients and seven staff; (III) CG:
seven patients and five staff.
Abbreviations: CG, control group; FIG, facilitated implementation group;
SDG, standard dissemination group.
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of the concept. Probes were used to encourage interviewees to
expand upon what they had already said.
Each interview took place at a time and place elected by the
respondent: for the first interview, the location was either face‐
to‐face at the hospital, at the respondent's home, or workplace, or
over the telephone. Due to COVID‐19 pandemic restrictions, all
but one second‐round interview took place over the phone. Two
patients were only interviewed once each: while one declined the
follow‐up interview, this patient was substituted by a patient who
wereinthesametypeofcare,atthesamesite,wassamesex,and
of a similar age (and had consented). The first and second authors
conducted the interviews, following a consensus meeting to
ensure that the interviews were conducted in an equivalent
manner. Neither had a prior or ongoing professional relationship
with the patients, nor were they involved in the study interven-
tions. Patient interviews lasted 10–40 min, and the staff inter-
views lasted 11–30 min. Each interview was audio‐recorded.
Before the analysis, the interviews were transcribed verbatim by
a trained secretary.
2.5.2 |Review of electronic health records
All patient electronic record reviews were performed by the first author,
with a structured review guide consisting of 12 items conceptualising
patient participation (see Table 3,leftcolumn).
20
These items were
previously procured via a thorough conceptualisation,
20,21
including input
from and validated by patients with long‐term conditions, particularly
kidney disease.
5
The review guide was pilot‐tested with 5 health records,
indicating that the 12 items captured all reports of patient participation.
Reinforcing the necessity to reflect only upon what was explicitly
phrased, definitions were established (Table 3, right column).
2.6 |Data analysis
Data were analysed using qualitative content analysis
22
and descrip-
tive statistics,
23
and subsequently merged in a convergent mixed
methods approach.
18
2.6.1 |Qualitative data analysis
The first author conducted a qualitative content analysis, inspired by
Elo & Kyngäs,
22
using the software NVivo QSR International Pty Ltd
Version 15 (released in 2021). The transcribed texts of the patients
were analysed first, and then the transcripts from interviews with
staff were analysed separately, with the same approach:
−Initially, each interview transcript was read several times, to
become familiar with the data, and to reach an overall under-
standing of each text and then the entire data set. The initial
understanding was written down in two separate files (one for the
patient interviews, and one for the staff interviews), and used as a
backdrop for the continued analysis.
−Second, a deductive analysis organised the 12 attributes of
patient participation (Table 3,leftcolumn)intoamatrix.
20
Meaning units corresponding to each attribute were coded,
representing features for each of the 12 attributes (hereafter
referred to as ‘categories’),
20,21
illustrating both what was
known before and additional perspectives of patient participa-
tion. The categories were then appraised for similarities,
differences and nuances within and between themselves for
each data set.
−Subsequently, categories were analysed, embedding both patient
and staff perspectives, considering similarities and differences in
TABLE 3 Attributes of patient participation
20
in the review guide, and assessment criteria.
Attributes of patient participation: Mark YES (for presence) if (and only if) the record text signifies that:
Being listened to The patient's preferences are considered.
My experiences being recognised Whether and how the patient's experiences are considered.
Experiencing reciprocal communication Conversations characterised by reciprocity have taken place.
Having opportunities to share my symptoms or issues The patient has described their symptoms.
Having explanations as to my symptoms or issues The patient has received information about their symptoms.
Learning of what is being done [in terms of healthcare procedures] The patient receives or has received information about what is being done.
Learning what is planned for me The patient has received information about plans.
Taking part in planning The patient has participated in planning of care and/or treatment.
Phrasing my own [health‐related] goals The patient has identified goals and/or their personal goals are imparted.
Learning to manage symptoms or issues The patient knows how to and/or acts on knowledge.
Managing [prescribed] treatments The patient manages prescribed treatment in part or fully.
Performing self‐care (to improve health) The patient performs self‐care.
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patient participation, and how these were illustrated, by which
group, and for which categories.
2.6.2 |Quantitative data analysis
The descriptive data retrieved from the electronic health records
were imputed into the software IBM Statistical Package for Social
Sciences (SPSS), version 29. Frequencies and percentages were used
to present demographic data and the distribution of each of the
12 attributes transpiring in the health records:
−To compare differences in demographics, Chi
2
and Fishers' exact
tests were used.
−To compare outcomes between the CG and the intervention
group sites the Kruskal–Wallis test was used with respect to the
presence of documentation on patient participation from the
patient perspective (marked as ‘Yes’for presence, ‘No’for
absence, as outlined in Table 3).
−To study the effects of predictor variables on categorical
outcomes (such as intervention, age, gender and treatment
groups), binary logistic regression models
24
were employed.
Ap‐value of <0.05 was established and odds ratios were used.
2.6.3 |Integrating findings from the qualitative and
quantitative results
An integrated mixed methods followed the statistical analysis.
First, the prior separate analyses of each individual's first and
second interview were revisited, now investigating whether and
how each of the participants framed patient participation over
time. The analysis was then concluded by integrating the findings
addressing patient and staff perspectives on participation; that is,
the integration of the two sets of qualitative data, in addition to
what was visualised in the health records (i.e., the quantitative data
set).
25
For each time point, the findings were appraised in relation
to each other. In this process, we considered to what extent and in
what ways they represented converging or diverging conceptua-
lisations of patient participation (qualitative data), and/or were
associated with each other (quantitative data in conjunction with
the qualitative data set and findings)
18
:
−The two qualitative sets of findings were considered in
relation to each other, including the overlap between their
conceptualisation of patient participation, and any similarities or
differences.
−Quantitative findings were then revisited, embedding their
correspondence, or lack thereof, with the qualitative findings.
−Third, and last, results were considered in relation with which site
patients or staff, respectively, were associated—with either the
intervention groups or the CG sites, respectively.
2.7 |Trustworthiness
All authors engaged in repeated discussions during the separate
analysis processes and regarding emerging and final findings.
26
Quotations were selected to illuminate the results.
27
2.8 |Ethics
This study was approved by the Swedish Ethical Review Authority
(2019‐02748 and 2020‐04296) and conducted in line with the
Declaration of Helsinki's ethical principles for medical research.
28
3|RESULTS
The results are presented as follows:
1. Qualitative results on patient and staff priorities and experiences
regarding patient participation, as well as an assessment of
impacts of the study interventions from both patient and staff
perspectives (Quotations are coded P for patient interview, and
S for staff, with interviews in running numbers).
2. Quantitative results (based on electronic records) on patient
participation in medical records and the potential impact of
the study interventions on enhancing person‐centred patient
participation.
3. Integration of the qualitative and quantitative results.
3.1 |Qualitative results
3.1.1 |The patient perspective
From a patient perspective, participation denoted being listened to
by CKD staff and engaging in mutual communication (on one's
symptoms, measurements and treatment, but also about the every-
day life aspects of living with CKD). Participation meant knowing
what would happen and when in terms of plans and procedures,
having received and recognised such information delivered by the
staff. Partaking in knowledge exchange improved one's sense of
coherence between the illness, one's symptoms, treatments and
potential side effects. While patients also depicted participation as
performing self‐care, this included understanding and adhering to
dietary restrictions and physical activities, as prescribed. Some
patients described participation in means of defining their personal
goals; for example, delaying the trajectory of their disease, and/or
improving their state of health.
When I found out about my creatinine …I had overly
high creatinine values, I had to watch out for certain
things, and I had to learn more, like, what to eat and
what not to eat. [Learning] that you should eat less
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protein, and such …because with reduced kidney
function, you cannot process protein…(P13)
The continuity and access to kidney care signified opportunities
for them to engage. This enabled them to engage in dialogue about
their care, gradually gaining an understanding of their illness, and
partaking by becoming more aware of bodily changes and why
symptoms occurred. One avenue of participation was actively
involving themselves in their care and treatment.
Each set of patient interviews conveyed between 5 and 12 of the
categories conceptualising patient participation (median 11). Two
categories were illuminated by all patients: participating in terms of
‘receiving explanations as to what will be done’, and ‘taking part in
planning’.‘Phrasing personal goals’was the category least mentioned
by patients regarding participation. No additional aspects of patient
participation beyond these categories were identified, and no
difference was identified between the two interview time points in
terms of how patients discussed their participation. Furthermore,
there was no correspondence in how patients conceptualised and
prioritised their participation and which site they visited for their
CKD (i.e., whether they were patients at a control, SDG or FIG site).
3.1.2 |The staff perspective
From a staff perspective, patient participation was about patients
being engaged in their own care and treatment. It was essential for
staff that patients managed their treatment, and they focused on
facilitating such patient involvement. To staff, patient participation
occurred when patients were involved in activities related to their
treatment, either in part or fully, varying from, for example,
calculating how much fluid should be drawn during haemodialysis
to self‐dialysis. Patient participation was considered dependent on
whether patients understood how their bodily functions, treatment,
self‐care and changes in blood test results corresponded. Conse-
quently, to increase patient participation, the staff gradually, and
repeatedly, gave information to their patients.
Many are participating in the sense that they have
received training in dressing their machine, and in
conjunction with dressing the machine, we provide
more detailed information about how it operates. This
allows them to consider their entire process of fluid
balance and diet, providing them with a context in
which they can better manage their illness…(S2)
Staff suggested that patients occasionally did not want to be
engaged in such matters and instead resigned themselves from being
involved in their kidney care.
Categories conceptualising the staff perspective on patient
participation varied from 7 to 12 (median 10), with ‘recognising
patient experiences’,‘providing explanations as to what will be done’
and ‘co‐planning care’identified across all interviews. The results did
not indicate any differences in how staff spoke about patient
participation, either over time or in relation to whether their
workplace was in any of the intervention groups or at a control site.
3.2 |Quantitative results: Documentation on
patient participation
In terms of the data recorded in the electronic health records
(Figure 3), the patient perspective on patient participation was
evident in less than 50% of the 240 medical records. Only two
attributes—‘sharing symptoms/issues’and ‘learning what is done’—
were in the majority of patient records. Experiencing reciprocal
communication and phrasing their own health‐related goals were the
least frequently documented attributes of patient participation.
The results indicated that there were some significant differ-
ences between the sites in the three groups (CG, SDG and FIG) in
terms of documenting patient perspectives on patient participation
(p< 0.05) (Table 4). At baseline, ‘having reciprocal communication’
was not documented at all in the SDG, while it was documented most
often in the CG. Also, the CG had the highest documentation of
‘learning about what is being done’. However, by means of logistic
regression, no differences were found in regard to age, gender,
treatment (or outpatient care only), or baseline‐value of documenta-
tion frequency (Table 5).
Six months post‐interventions, the SDG demonstrated compara-
tively lower documentation for ‘experiences being recognised’,
‘learning to manage symptoms’and ‘performing self‐care’(in contrast
to both the CG and the FIG). In terms of ‘having explanations as to
symptoms and/or issues’, the CG had the highest frequency of
documentation compared to the two intervention groups at this point.
At the 12‐month mark, the CG continued to have the highest
documentation for ‘having explanations as to symptoms and/or
issues’compared to the two intervention groups. Conversely, ‘being
listened to’was most frequently documented in the SDG.
3.3 |Integration of the qualitative and quantitative
results—Mixed findings
In the qualitative data, both patients and staff conceptualised patient
participation as encompassing learning, as in learning about what is
done, and what is planned for one's health and health care. Furthermore,
taking part in planning signified patient participation to both groups.
While patients denoted their participation as framing their learning in
respect to their goals, and as an understanding and awareness of one's
disease and its management in day‐to‐day life, they described the need
to proactively partake in care and treatment plans. This included
participation as the mutual exchange of knowledge, emphasising
recognition of when one share experiences of CKD and/or treatment.
Staff on the other hand also considered these ways of being engaged,
albeit framed within their primary focus of patient participation as
patient involvement in managing their care and treatment.
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FIGURE 3 The percentage (%) of documented records found for each attribute and time point, conceptualising patient participation.
18
The
data are divided into three groups: the control group (CG), the standard dissemination group (SDG) and the facilitated implementation group (FIG).
TABLE 4 Significance analysis of documentation frequencies (presence) between and within the control group and interventions sites.
Baseline 6 months post‐intervention 12 months post‐intervention
n(%) n(%) n(%)
Attribute of patient
participation CGn56 SDGn50 FIGn56 pValue CGn56 SDGn50 FIGn56 pValue CGn56 SDGn50 FIGn56 pValue
Being listened to 25 (45) 24 (48) 45 (34) 0.130 24 (43) 22 (44) 41 (31) 0.123 14 (25) 24 (48) 39 (29) 0.022
Experiences being
recognised
13 (23) 8 (16) 28 (21) 0.642 16 (29) 6 (12) 42 (31) 1.000 14 (25) 8 (16) 35 (26) 0.348
Experiencing reciprocal
communication
10 (18) 0 (0) 5 (4) <0.001 2 (4) 1 (2) 5 (4) 0.839 1 (2) 1 (2) 4 (3) 0.862
Having opportunities to
share symptoms
42 (75) 31 (62) 79 (59) 0.110 31 (55) 25 (50) 69 (48) 0.635 29 (52) 25 (50) 60 (45) 0.627
Having explanations as to
symptoms
8 (14) 6 (12) 21 (16) 0.820 21 (38) 14 (28) 26 (19) 0.030 24 (43) 8 (16) 22 (16) <0.001
Learning about what is
being done
40 (71) 25 (50) 63 (47) 0.008 23 (41) 20 (40) 52 (39) 0.956 18 (32) 23 (46) 48 (36) 0.306
Learning what is planned 24 (43) 12 (24) 40 (30) 0.091 16 (29) 12 (24) 36 (27) 0.866 14 (25) 6 (12) 36 (27) 0.101
Taking part in planning 16 (29) 11 (22) 30 (22) 0.626 13 (23) 10 (20) 38 (28) 0.467 17 (30) 9 (18) 33 (25) 0.338
Phrasing own goals 5 (9) 1 (2) 14 (10) 0.181 1 (2) 2 (4) 8 (6) 0.444 1 (2) 1 (2) 5 (4) 0.700
Learning to manage
symptoms
6 (11) 8 (16) 21 (16) 0.645 9 (16) 2 (4) 37 (28) 0.001 10 (18) 1 (2) 30 (22) 0.005
Managing treatments 25 (45) 15 (30) 56 (42) 0.252 24 (43) 12 (24) 53 (40) 0.091 14 (25) 11 (22) 42 (31) 0.391
Performing self‐care 18 (32) 10 (20) 42 (31) 0.277 21 (38) 3 (6) 41 (31) 0.001 9 (16) 12 (24) 38 (28) 0.200
Note:pValues are based on the Kruskal–Wallis test. Significance value p= 0.05.
Abbreviations: CG, control group; FIG, facilitated implementation group; SDG, standard dissemination group.
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TABLE 5 Analysis of significant differences between and within the control group and interventions sites by means of logistic regression.
Attribute of patient
participation Predictor
Baseline 12 months 18 months
OR*
(Exp (ß))
95% CI for Exp (ß)
pValue
OR
(Exp (ß))
95% CI for Exp (ß)
pValue
OR
(Exp (ß))
95% CI for Exp (ß)
pValueLower Upper Lower Upper Lower Upper
Being listened to Group in interventions (CG,
SDG, FIG)
1.361 0.986 1.878 0.061 1.355 0.972 1.889 0.073 1.015 0.718 1.435 0.932
Age 0.986 0.963 1.010 0.248 1.002 0.979 1.026 0.871 1.020 0.996 1.044 0.110
Gender 0.860 0.495 1.493 0.591 0.894 0.507 1.576 0.698 0.512 0.289 0.909 0.022
Intermittent outpatient care
or KRT
2.497 1.444 4.318 0.001 2.383 1.344 4.226 0.003 1.953 1.086 3.512 0.025
Baseline value of the outcome
measure
1.869 1.063 3.287 0.030 1.693 0.944 3.035 0.077
Experiences being recognised Group in interventions 1.082 0.729 1.605 0.697 0.882 0.599 1.299 0.526 0.952 0.653 1.387 0.797
Age 0.997 0.970 1.026 0.851 1.022 0.996 1.050 0.095 1.026 1.000 1.052 0.047
Gender 0.946 0.483 1.850 0.871 0.568 0.301 1.071 0.080 0.636 0.342 1.183 0.153
Intermittent outpatient care
or KRT
4.516 2.126 9.594 0.000 4.892 2.381 10.054 0.000 1.820 0.946 3.502 0.073
Baseline value of the outcome
measure
1.976 0.966 4.041 0.062 1.492 0.719 3.096 0.282
Experiencing reciprocal
communication
Group in interventions 2.488 1.315 4.708 0.005 1.068 0.430 2.653 0.888 0.766 0.249 2.353 0.641
Age 0.979 0.931 1.029 0.400 1.037 0.981 1.096 0.204 1.048 0.989 1.110 0.115
Gender 2.391 0.638 8.962 0.196 0.342 0.077 1.515 0.158 1.248 0.217 7.185 0.804
Intermittent outpatient care
or KRT
0.624 0.208 1.876 0.401 1.338 0.307 5.820 0.698 1.579 0.278 8.956 0.606
Baseline value of the outcome
measure
0.000 0.000 0.999 0.000 0.000 0.999
Having opportunities to share
symptoms
Group in interventions 1.442 1.031 2.015 0.032 1.155 0.830 1.606 0.394 1.161 0.843 1.599 0.359
Age 1.003 0.980 1.026 0.822 1.012 0.989 1.036 0.308 1.015 0.992 1.038 0.209
Gender 0.767 0.439 1.340 0.352 0.707 0.404 1.237 0.224 0.640 0.373 1.100 0.107
Intermittent outpatient care
or KRT
1.698 0.992 2.907 0.053 2.852 1.655 4.915 0.000 1.762 1.038 2.989 0.036
Baseline value of the outcome
measure
2.310 1.308 4.081 0.004 1.698 0.976 2.954 0.061
(Continues)
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TABLE 5 (Continued)
Attribute of patient
participation Predictor
Baseline 12 months 18 months
OR*
(Exp (ß))
95% CI for Exp (ß)
pValue
OR
(Exp (ß))
95% CI for Exp (ß)
pValue
OR
(Exp (ß))
95% CI for Exp (ß)
pValueLower Upper Lower Upper Lower Upper
Having explanations of
symptoms
Group in interventions 0.930 0598 1.448 0.750 1.728 1.200 2.486 0.003 1.976 1.368 2.853 0.000
Age 1.001 0.970 1.032 0.967 1.034 1.008 1.060 0.010 1.027 1.001 1.055 0.041
Gender 0.893 0.428 1.862 0.762 0.622 0.333 1.161 0.136 0.827 0.431 1.587 0.568
Intermittent outpatient care
or KRT
1.188 0.575 2.455 0.642 1.672 0.892 3.134 0.109 0.926 0.491 1.747 0.812
Baseline value of the outcome
measure
2.382 1.073 5.287 0.033 1.243 0.518 2.981 0.627
Learning about what is
being done
Group in interventions 1.599 1.158 2.207 0.004 1.085 0.781 1.507 0.628 0.957 0.690 1.327 0.793
Age 0.994 0.972 1.017 0.629 1.036 1.012 1.061 0.003 1.020 0.997 1.044 0.081
Gender 1.392 0.815 2.379 0.226 0.972 0.560 1.687 0.920 1.098 0.633 1.904 0.740
Intermittent outpatient care
or KRT
1.365 0.809 2.303 0.244 1.638 0.956 2.808 0.072 1.238 0.726 2.112 0.433
Baseline value of the outcome
measure
0.923 0.534 1.593 0.773 1.211 0.703 2.086 0.491
Learning what is planned Group in interventions 1.272 0.918 1.762 0.149 1.038 0.720 1.497 0.842 0.865 0.591 1.266 0.456
Age 1.001 0.978 1.025 0.948 1.045 1.018 1.072 0.001 1.022 0.996 1.048 0.098
Gender 1.316 0.740 2.342 0.350 0.468 0.253 0.868 0.016 0.714 0.381 1.337 0.292
Intermittent outpatient care
or KRT
1.343 0.771 2.339 0.297 1.253 0.680 2.310 0.470 1.516 0.811 2.834 0.193
Baseline value of the outcome
measure
2.265 1.206 4.254 0.011 1.967 1.042 3.712 0.037
Taking part in planning Group in interventions 1.231 0.853 1.775 0.267 0.858 0.587 1.253 0.428 1.134 0.790 1.629 0.496
Age 1.003 0.977 1.029 0.835 1.021 0.995 1.047 0.114 1.031 1.006 1.057 0.015
Gender 0.514 0.277 0.952 0.034 0.671 0.360 1.252 0.210 0.632 0.342 1.170 0.144
Intermittent outpatient care
or KRT
2.334 1.232 4.422 0.009 2.639 1.380 5.045 0.003 1.029 0.555 1.907 0.927
Baseline value of the outcome
measure
1.692 0.857 3.343 0.130 1.467 0.737 2.919 0.275
Phrasing own goals Group in interventions 0.839 0.457 1.539 0.570 0.56 0.214 1.465 0.237 0.686 0.233 2.023 0.494
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TABLE 5 (Continued)
Attribute of patient
participation Predictor
Baseline 12 months 18 months
OR*
(Exp (ß))
95% CI for Exp (ß)
pValue
OR
(Exp (ß))
95% CI for Exp (ß)
pValue
OR
(Exp (ß))
95% CI for Exp (ß)
pValueLower Upper Lower Upper Lower Upper
Age 1.006 0.968 1.046 0.763 1.067 1.018 1.119 0.007 1.036 0.978 1.097 0.229
Gender 0.929 0.355 2.434 0.881 0.462 0.130 1.645 0.233 1.587 0.290 8.697 0.595
Intermittent outpatient care
or KRT
8.830 1.997 39.033 0.004 0.874 0.236 3.234 0.840 4.053 0.446 36.820 0.214
Baseline value of the outcome
measure
1.055 0.111 10.025 0.963 2.879 0.478 17.337 0.248
Learning to manage symptoms Group in interventions 0.851 0.539 1.345 0.490 0.595 0.376 0.940 0.026 0.757 0.484 1.186 0.225
Age 1.002 0.971 1.034 0.895 1.029 1.002 1.058 0.037 1.021 0.992 1.051 0.158
Gender 0.684 0.331 1.417 0.307 0.982 0.497 1.942 0.959 0.783 0.389 1.575 0.492
Intermittent outpatient care
or KRT
1.552 0.739 3.262 0.246 2.328 1.154 4.695 0.018 0.886 0.442 1.779 0.734
Baseline value of the outcome
measure
1.808 0.778 4.202 0.169 2.597 1.132 5.957 0.024
Managing treatments Group in interventions 1.019 0.743 1.399 0.907 1.033 0.746 1.431 0.846 0.855 0.593 1.234 0.403
Age 0.999 0.977 1.022 0.951 1.028 1.005 1.052 0.017 1.027 1.002 1.053 0.035
Gender 1.089 0.634 1.872 0.757 0.641 0.370 1.111 0.113 0.489 0.269 0.890 0.019
Intermittent outpatient care
or KRT
1.871 1.102 3.175 0.020 1.521 0.879 2.634 0.134 1.761 0.956 3.246 0.070
Baseline value of the outcome
measure
1.127 0.648 1.959 0.673 1.921 1.054 3.499 0.033
Performing self‐care Group in interventions 0.959 0.683 1.345 0.806 1.072 0.752 1.528 0.700 0.727 0.492 1.073 0.108
Age 0.993 0.969 1.018 0.592 1.028 1.003 1.054 0.027 1.025 1.000 1.052 0.054
Gender 1.025 0.576 1.825 0.933 0.700 0.385 1.275 0.244 0.482 0.263 0.885 0.019
Intermittent outpatient care
or KRT
0.904 0.517 1.582 0.724 1.315 0.725 2.383 0.367 0.979 0.533 1.799 0.946
Baseline value of the outcome
measure
2.323 1.256 4.299 0.007 1.244 0.647 2.391 0.513
Note:pValues are based on the Kruskal–Wallis test and logistic regression model. OR of the presence versus absence of documentation on patient participation from the patient perspective. Significance
value p= 0.05.
Abbreviations: CG, control group; FIG, facilitated implementation group; OR, odds ratio; SDG, standard dissemination group.
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Staff described how they provided patients with information. A
corresponding yet distinctive narrative transpired from the patients,
who described a gradual acquisition of knowledge representing a
feature of their participation. Both patients and staff noted that
mutual sharing of information resulted in patients experiencing
greater coherence between illness, symptoms and treatment; staff
envisioned patient participation and control over their illness to
improve via a more comprehensive understanding.
The electronic records revealed a focus on patient communica-
tion of symptoms, and whether staff provided information about
symptomatology, disease progression and care planning. Merging
these quantitative findings with patient and staff interview outcomes,
patient records were found to illuminate few if any perspectives
regarding patients' conceptualisations of participation.
Neither the qualitative nor quantitative results revealed any
systematic impact of staff‐directed interventions on patient participation.
Rather, staff kept focusing on recognising patients with information
needs, with an end goal of patient engagement in treatment. Patients
focused on participation in a broader spectrum, including personal goals
and self‐care, with no modification over time.
4|DISCUSSION
The aim of this study was to describe patient and staff priorities and
experiences regarding patient participation in kidney care over an
18‐month period, using interviews and structured reviews of health
records. The study also evaluated the impact of staff‐directed interven-
tions proposed to enhance more person‐centred patient participation.
We identified similarities in how patient participation was illustrated in
kidney care (e.g., mutual sharing of knowledge and information), but also
noted discrepancies prevailing in certain aspects of participation, where
patients and staff had differing priorities regarding patient participation.
4.1 |Results discussion
Our findings support the notion that acknowledging patients'
abilities, knowledge,
29
priorities and experiences
30
is essential in
facilitating their appreciation and involvement in the process of
navigating a long‐term health condition. Previous studies have
shown that participation occurs when there are opportunities for
mutual dialogue.
31,32
Yet, in this study, we found certain discrepan-
cies in what was in focus regarding to patient participation between
patients and staff, and patient connotations were less addressed in
their health records. Such discrepancies may keep patients from
engaging on their own terms, and may negatively affect their ability
to manage their health in everyday life.
33
Rather, a shared
communication across the patient's team of healthcare profes-
sionals should be envisaged in the patient's health record.
34
More
person‐centred care—here encapsulated as a patient's right to
participate in their care on their own terms—requires knowing a
patient's preferences, beliefs and values.
35
Both this study and previous research illustrate the need to build
a mutual sense of trust and commitment,
36
supported by a common
understanding between patients and staff.
7
Being engaged in self‐
care is a requirement when living with a long‐term condition, and has
positive outcomes on patient wellbeing and health.
37
While
conducting self‐care was a way of participating in care for patients,
staff understood patient participation in terms of activities; that is,
those performed by the patient in the kidney care context,
encouraged by staff to be involved in such manners. Previous studies
have shown that staff tend to overestimate patient readiness to carry
out CKD care and treatment, such as kidney replacement therapy.
5,38
Patients suggested they adapt gradually,
39
and require time to
engage in treatment themselves.
40
A mutual dialogue when it comes
to participation preferences, based on the individual's resources, is
still pending.
Rather, this study reinforces that participation represents attitudes
and beliefs among patients and staff.
32,33
Insufficient communication
41
and inequality in caring relationships,
42
constitute hampering elements.
With no noticeable effect from our interventions, appropriate means
to facilitate a joint conceptualisation for patient participation are still
needed; the more responsive staff are to patient preferences for
engagement, the more appropriately interventions can be directed at
patients who are ready and willing to be actively involved in their own
care.
43
We suggest progressing to person‐centred patient participa-
tion, incorporating the recognition of patients' lived experience to
improve and evaluate quality of care.
44
4.2 |Methodological considerations
With patients and staff interviewed at two time points, the findings
lack a prolonged follow‐up of their experiences; since change may
take time, the suggested lack of effect of the interventions on their
conceptualisation and experiences should be interpreted with some
caution.
45
Still, there was also no indication of any change when
reviewing records at 18 months, but the forthcoming process
evaluation will investigate whether and how interventions were
adopted by staff and managers.
Interviews were conducted mainly over telephone, with no
perceived effect on the quality of the interviews
46
; this ensured safe
procedures during the pandemic. Additional interviews might have
provided further details, although the medical records also illuminated
aspects shared across professional teams; prior studies indicate that
such reports are at times limited, calling for a careful interpretation of
whether they aid in a complete evaluation of the quality of care.
47
5|CONCLUSIONS
Patient participation in health care encompasses an understanding and
management of long‐term conditions in everyday life. In this study,
patients with CKD conceptualised participation as encompassing
mutual communication, and focused on patient participation in terms
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of 24/7 management of their care and treatment. Patient perspectives
on their involvement were recorded only in terms of a few attributes,
but patient records primarily represented staff actions to encourage
and priorities for patient participation. No effects from the staff‐
directed interventions to enhance person‐centred patient participation
were found, but further studies exploring a mutual understanding of
patient resources and priorities are needed to support person‐centred
patient participation.
6|PRACTICE IMPLICATIONS
Both patients and healthcare staff suggest that patient participation
entails having the knowledge and skills to manage long‐term
conditions, like CKD. Yet, it is important to recognise that the
different priorities and experiences of patients and staff in terms of
patient participation may hamper person‐centred care. Rather, the
findings call for further engagement in mutual conceptualisations to
sustain person‐centred patient participation.
AUTHOR CONTRIBUTIONS
Caroline Hurtig and Ann Catrine Eldh designed this study. Caroline
Hurtig and Liselott Årestedt performed the data collection and
analyses, with repeated discussions with authors Ann Catrine Eldh
and Fredrik Uhlin. Ann Catrine Eldh and Fredrik Uhlin planned and
delivered the interventions. Caroline Hurtig drafted the manuscript,
in dialogue with Ann Catrine Eldh. All co‐authors contributed
substantially to the text and approved the final version before its
submission.
ACKNOWLEDGEMENTS
This study was supported by research grants from the Medical Research
Council of Southeast Sweden (FORSS‐930678; FORSS‐939775 and
FORSS‐968285), the Swedish Kidney Foundation (F2018‐0036) and
Region Östergötland (LIO‐919 901).
CONFLICT OF INTEREST STATEMENT
The authors declare no conflict of interest.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the
corresponding author upon reasonable request. The 4Ps tool is
protected by copyright and is available for free upon reasonable
request from the last author.
ORCID
Caroline Hurtig http://orcid.org/0000-0002-9948-568X
Ann Catrine Eldh https://orcid.org/0000-0002-7737-169X
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How to cite this article: Hurtig C, Årestedt L, Uhlin F, Eldh AC.
Patient participation—18 months of patient and staff
perspectives in kidney care: a mixed methods study
addressing the effects of facilitating staff person‐centredness.
J Eval Clin Pract. 2025;31:e14099. doi:10.1111/jep.14099
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