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Facilitating person-centered patient participation in
kidney care—a process evaluation of a quasi-
experimental study incorporating a tool and training
of local implementation teams
Liselott Årestedt ( liselott.arestedt@lnu.se )
Linnaeus University
Fredrik Uhlin
Linköping University
Ann Catrine Eldh
Linköping University
Research Article
Keywords: Patient participation, person-centered care, process evaluation, implementation, facilitation,
context, mixed methods
Posted Date: August 25th, 2023
DOI: https://doi.org/10.21203/rs.3.rs-3152974/v1
License: This work is licensed under a Creative Commons Attribution 4.0 International License.
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Abstract
Background.
The transfer of innovations into healthcare is laden with challenges. Although healthcare professionals
are expected to adopt and full new policies, a more person-centered healthcare, with conditions allowing
preference-based patient participation is anticipated.
Methods.
The aim of the study was to evaluate two implementation strategies for person-centered patient
participation in kidney care, including dissemination of a clinical tool, and training and support of internal
facilitators. Nine Swedish kidney care units participated in the study (August 2019–September 2021),
strategically organized into: a control group (three sites, no support); a standard dissemination group
(three sites, with a tool for patient participation and guidance disseminated to the site managers); and an
implementation group (three sites, with the tool and guidance disseminated as above, plus a six-month
support program for designated internal facilitators). This process evaluation was comprised of repeat
interviews with managers (n = 10), internal facilitators (n = 5), recordings, and notes from the
interventions, and Alberta Context Tool survey data (n = 78). Hybrid analyses comprised mixed methods:
descriptive and comparative statistics, and qualitative descriptive analysis.
Results.
None of the control group sites addressed patient participation. While the standard dissemination sites’
managers received and appreciated the tool and the accompanying guidance package, they made no
attempts to make further use of it. In the facilitated implementation group, ve internal facilitators from
three sites engaged in the support program. They welcomed the opportunity to learn about preference-
based patient participation, and about implementation, including potentially enhanced opportunities for
preference-based patient participation via the tool. Each site’s facilitators developed a separate strategy
for the dissemination of the tool: the tool was used with a few patients in each site, and only some staff
were involved. Although noting a general interest in improving patient participation, the internal
facilitators described limited local support. Rather, they suggested a longer support program and more
local backing and engagement.
Conclusions.
Facilitating person-centered patient participation is complex, given the need to address attitudes, beliefs,
and behaviors. This study indicates slow uptake and change, and more ecient strategies are needed to
ensure the fundamentals of care remain accessible to all.
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Contributions to the literature
Implementation is often complex and is even more so when it comes to policies addressing person-
centered care and patient participation.
A support program increased internal facilitators’ knowledge and understanding and helped them
reconsider how they enabled patient participation.
Few patients were engaged in co-designing preference-based patient participation in kidney care.
A context where a norm is considered to be established poses barriers to change, even if
implementation is not accomplished.
Support from managers and strategies engaging staff and patients is needed to ensure the
fundamentals of care; in this case, person-centered patient participation for all.
Background
An increasing amount of scientic literature demonstrates that the transfer of innovations into healthcare
practice is laden with challenges [1]. Even the implementation of high-quality evidence is associated with
barriers, linked to the knowledge in question, the context into which it shall be translated, and the
strategies employed to facilitate its progression into daily practice [2].When it comes to policies, there is
often even less evidence to begin with to promote change, but every so often there is a norm sustaining a
program change; end-users, like healthcare professionals, are expected to adopt essentials of such policy
as part of the implementation process [3]. While such adoption is key for implementation, it is estimated
to occur as a result of a reasonable uptake of or agreement with proposed values. This seems to be the
case with, for example, patient participation, which has been repeatedly suggested as an ideal standard
in healthcare services [4]. Most professionals would likely be willing to agree that they promote optimal
conditions for patients to engage in their care and health issues, although this is not always the case;
rather, further efforts are required to understand what enables and hinders the implementation of person-
centered opportunities for patient engagement [5].
Patient participation has been on the agenda for at least 50 years, but healthcare professionals and
organizations still do not fully embrace opportunities to engage patients in a way and to the extent they
prefer [6]. Although healthcare professionals wish to engage patients, this engagement is often based on
the staff’s own assumptions regarding in what way and to what extent patients should be involved [7].
Patients, on the other hand, may—or may not—share the same assumptions. Former studies indicate that
around 50% of patients in somatic care receive opportunities to engage in a way matching their
preferences for participation, although up to 20% of patients are expected to be more involved than they
would prefer or have fewer opportunities to be engaged than they prefer [8,9]. Consequently, better
opportunities to achieve person-centered levels and types of patient participation should be
implemented.
Methods
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Aim
The aim of this study was to evaluate two implementation strategies: the dissemination of a clinical tool,
and training and support of internal facilitators (IF) for person-centered patient participation in kidney
care.
Design
A process evaluation design was chosen, inspired by complex interventions and realistic approaches
[10,11,12].This study is reported according to Revised Standards for Quality Improvement Reporting
Excellence (Squire 2.0 [13] and Standards for Reporting Implementation Studies (StaRI) Statement [14].
Setting and sample
Nine out of eleven kidney care sites in southeast Sweden agreed to participate in the study (two declined
due to stang issues). Seven of these sites had participated in a prior study, mapping experiences of
patient participation and contextual barriers and enablers for preference-based patient participation
[15,16]. The sites represented university, regional, and local hospitals, all sites had outpatient dialysis
units, and seven of them also provided predialysis outpatient kidney care. At all sites, the majority of staff
were nurses, but all sites also employed assistant nurses and physicians.
To ensure that the intervention and control groups were as equal as possible, sites were strategically
organized into three groups with three sites each: a control group (CG), a standard dissemination group
(SDG), and a facilitated implementation group (FIG) (the two latter represent intervention groups).
Interventions
Recognizing that positive outcomes are dependent on strategies facilitating the implementation of a
particular object in a particular context [12], the project was framed by the integrated Promoting Action on
Research Implementation in Health Services program, i-PARIHS [17]. Building on several previous studies
[cf. 18,19,20], it tested two interventionsmanufactured on the following assumptions [10]:
1. Swedish healthcare professionals have been compelled to provide for patient participation since at
least 1982 (when the national healthcare act was introduced) and are likely aware of their obligation.
2. There is increasing awareness of the need for person-centered care, due to various efforts to improve
opportunities for patients to engage in their health and healthcare issues [21,22].
3. Furthermore, many healthcare professionals and organizations are well-rehearsed in change
management and have prior experience of addressing barriers while implementing knowledge or
policies into practice [23].
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Accordingly, this study established a standard group (three units) which received no prompts at all for
enabling more person-centered patient participation.
Further, prior pilot studies have implied that there is a ne balance between providing enough support to
facilitate knowledge implementation and taking advantage of the preparedness of staff and
organization, empowering their potential to facilitate and sustain better and safer care [19,24-29].
Consequently, we set up two strategies to facilitate the implementation of person-centered patient
participation in kidney care, in comparison with the CG and each other. The strategies represented:
A standard dissemination group (SDG) where a package was sent via e-mail to two managers per
site: the rst-line manager and the head of the unit. The package included a tool to facilitate a shared
understanding of the patients’ preferences for, and experiences of, participation: the Patient
Preferences for Patient Participation tool, the 4Ps [30]. This comprised a two-page information
leaet, providing background on the tool and information on how tofacilitate its use in clinical
practice, including a follow-up and assessment of whether patients had had opportunities to engage
in their care in accordance with their preferences. In addition, a PowerPoint presentation including
both current knowledge about patient participation, and a guide to implementing the 4Ps to facilitate
preference-based patient participation was attached. It was suggested that this should be used in
additional local efforts to augment patient participation as an element of quality of care. The
emailed cover letter outlined the content and how this could be used with local healthcare
professionals, in correspondence with how national and regional authorities suggest its
implementation in healthcare organizations [29].
A facilitated implementation group (FIG). This group of three sites received the same dissemination
package as the above group (also sent to the rst-line managers and the head of units). In addition,
this FIG was offered a lean six-month intervention program, starting in October 2019 and ending in
March 2020. Four months ahead of the intervention’s start, the managers of the FIG (three sites) were
asked to assign two healthcare professionals to act as IFs [31].They were asked to consider three
characteristics when selecting their IFs: a) they should have an interest in developing and improving
clinical healthcare; b) their managers and colleagues should trust them to be able to support change
and improvements; and c) they should be willing to collaborate (with each other).
The support program was delivered by two external facilitators: one implementation expert, also an expert
in patient participation, plus a kidney care expert. The program (described briey in Table 1) comprised an
initial two-day meeting, followed by scheduled monthly individual or group sessions viavideo conference,
in accord with the Ifs’ choice of format,for ve consecutive months. It assembled the renowned
integrated Promoting Action on Research Implementation in Health Services framework [17], comprised
of a selection of seminars on contemporary knowledge about patient participation, the 4Ps tool as a
clinical tool, and a way of facilitating the implementation of evidence and policies. Aiming for the further
dissemination of preference-based patient participation strategies, it encouraged theIFsto employ their
previous knowledge and experience of quality improvement,yet with candid sessions addressing how to
identify and bridge barriers to change in clinical practice.
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For each of the sessions, a PowerPoint was presented to which the IFs had access both during and after
the intervention. All interactions were based on dialogue, addressing the needs and plans of the
facilitators, and their perceived local contexts.
Consequently, in response to their queries, evidence and tools were assembled and shared throughout the
intervention. Furthermore, an introduction lecture that one of the units had arranged (withone of the
researchers on the team, per initiative of the management) for all staff prior to the beginning of the
intervention in September, was made available to all facilitators.
Insert Table 1 here.
Data collection
This process evaluation was composed of interviews with managers (Table 2) and interviews with
internal facilitators (Table 3), data from the IF training and implementation support program, and data on
the local organizational context from the Alberta Context Tool survey (n =78, nurses only), collated from
Aug 2019 through Sept 2021. An overview of the data that was collected and employed is presented in
Table 4.
Insert Table 2, Table 3 and Table 4 here
Individual interviews with managers and IF were conducted twice: manager interviews at the start and the
end of the intervention period, and IFs at the end of intervention period and at a follow-up interview one
year later. All participants received verbal and written information about the study, including information
about the voluntary nature of their participation. In accordance with the World Medical Association’s
ethical principles[32], [Accessed November 25, 2022] ethical approval was obtained by the Regional
Ethical Review Board of Linkoping, Sweden (ID2019-02748 and 2020-04296), following individual
informed consent.
The interviews were performed by the rst author and a PhD candidate on the research team and
followed a semi- structured interview guide. These researchers were blinded to the intervention and
control groups, and not aware of which, if any, of the intervention group the manager interviewees
represented. Thus, no manager was asked specically about their experience of any dissemination
and/or implementation support program, but managers of such sites voluntarily brought this up in their
second (and nal) interviews.
The audio-recorded interviews with managers lasted from 9–34 minutes and the interviews with IF lasted
from 19–42 minutes. All interviews were then transcribed verbatim by an authorized secretarial service.
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Data also included diary notes by the IFs (three out of ve facilitators completed and submitted these
notes), notes from the researchers performing the support program, copies of all material used and
handed to the IFs, and voice recordings from all support program meetings of the implementation
intervention.
Lastly, the Alberta Context Tool, ACT [33], was distributed to all nursing staff across sites via the
managers, who were asked to share these via pigeon-hole mailboxes. ACT is a recognized survey
previously translated (and validated) into Swedish [33], used for the measurement of eight concepts
regarding organizational context in complex healthcare settings, with a higher score indicating a more
positive work environment and potentially better use of research evidence [34]. General reminders were
sent to the managers, asking them to nudge staff to respond, but no individual reminders were
performed. Data were used to compare local contexts for the three groups (CG, SDG, and FIG).
Furthermore, particular items were addressed to map context factors known to impact knowledge
implementation and/or change: to what extent one’s manager a) attends to and acts to settle issues, b)
actively supervises others in their work; and c) to what extent the team works to provide patients with
what they need; and d) how often the team performs a care plan together with the patient and their next
of kin.
Analysis
For the transcribed interviews, a descriptive qualitative analysis was used [35,36]. In addition, a mixed
methods analysis, as dened by Sandelowski [37], was applied to all data, as described below.
Analyses began with the IF interviews. These were analyzed inductively, so as to understand their
experiences of the support program, their role, and their context. Furthermore, the analyses addressed
what they described as having performed and achieved as IFs.
Secondly, the IFs’ diary notes and material from the support program were analyzed (the latter by means
of both training material and recorded sessions: a total of 11 hours (including all sessions)). This phase
employed a deductive approach, by means of the following steps, as suggested by Linnan & Steckler
[38]:dose delivered (that is, what content was delivered to the IFs, in what format, by whom, when and the
extent); dose received (what parts of the support program the IFs attended); and delity (what, if any,
adjustments were made to the support program, when, and why).
Thirdly, the transcribed interviews with managers (n =10) were added to the analysis. These texts were
addressed with adescriptive qualitative approach (as above), identifying what managers described they
had done, how, and why regarding patient participation at their sites during the project’s lifetime.
In addition, all data from the support program was analyzed, relating the ‘dose delivered’ and ‘dose
received’ aspects described by IFs (and managers, if demonstrated) to what was manifested in the
planned and performed training, material delivered, and the audio recordings. ACT data was organized
into the three groups: CG, SDG, and FIG, as previously described, to investigate whether there were
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differences in organizational context between groups. For the analysis, non-parametric tests were used
(Kruskal Wallis and Mann-Whitney U tests) to compare each item; the level of signicant variation
between sites was set to p <0.05.
In the fourth and nal phase, a summary of all emerging outcomes was formed, based on the following
questions, guided by a realist approach to process evaluation [11,12]:
1. What worked?
2. For whom?
3. In what context?
4. Why or why not?
5. With what outcomes?
Results
The ndings are presented in the following order: a report of the context and the facilitation followed by
details of what worked (or did not work); how the interventions were perceived, and enacted (or not
enacted) and why things worked (or did not work) and with what outcomes, respectively.
The kidney care context
Managers representing all nine sites considered patient participation important. They pronounced that
patient participation was provided for in their sites, describing that patient participation is eminent in
kidney care; it was considered addressed because of the long relations established with the patients with
end-stage kidney disease. The managers described that in general, their staff should enable patient
participation (but described neither what this concerned nor how it was facilitated). The analysis of the
ACT showed no statically signicant differences in demographics between the three groups (CG, SDG
and FIG) (that is: responding staffs’ gender, age, level of education, profession). Variables linked to
employment also did not differ between the sites (years of experience, working hours, and type of
employment). For the eight dimensions of organizational context (leadership, culture, evaluation, social
capital, formal interactions, informal interactions, structural and electronic resources, and organizational
slack in stang, space, and time) a statistically signicant difference between the groups emerged only
for the latter dimension (organizational slack) in four items describing resources: the SDG group sites
had higher reports on having enough staff to get the necessary work done, but reported the lowest score
for having a private space for staff exchanges than CG and FIG. For the remaining two items where there
was a difference between the groups—time to talk about the patient care plan and time to talk about new
clinical knowledge—the FIG group sites had the lowest reports compared to the sites within the CG and
SDG groups.
The facilitation (intervention)
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The standard dissemination and the implementation
support program was mainly delivered as planned.
Distribution of the package to the managers was made
according to plan. All managers in the SDG and the FIG
described having read about the tool for patient
participation and the guidance to support implementation
that they had received via e-mail. No site (besides the one
that had arranged for a pre-project seminar for all staff)
made contact or requested further support, although
seminars were advertised as free and available.
In the FIG, one site assigned only one IF (rather than the suggested two). Other adjustments regarded the
plans: the web-based support following the face-to-face start of the implementation support program was
either available per site or jointly. The rst two meetings were held per site, followed by a joint meeting, as
suggested by the program. In addition, the third meeting was proposed and performed as joint meeting.
At this point, the IFs expressed that they preferred the two nal meetings be joint (rather than per site).
Midway through the implementation support program, when the IFs asked for support on how to
assemble and capture patient reports by means of the 4Ps tool, one of the external facilitators
constructed and shared two means: a way to assess an individual’s reports over time, and/or for
assembling and assessing a number of patient reports at one time point.
The IFs described the implementation support program as rich in content. It had contributed to their
increased understanding and opened up new perspectives. External facilitators were described as
arming, enthusiastic and encouraging. The group meetings had become valuable for exchanging
experiences regarding working methods, andcontributed to new ideas, problem solving, and support. As
all IFs came from the same context—i.e., kidney failure care—and accordingly, there was an
understanding of each other's context. The arrangement of initial physical meetings and then digital
meetings was described as positive.
What worked (or did not work): how the interventions were perceived, and enacted (or not enacted)
The managers found the tool (delivered to the standard dissemination and implementation support sites)
to be appropriate and interesting. None of the managers commented on the support and guidance that
accompanied the tool. Furthermore, no managers made any additional efforts to address patient
participation in their site. Neither did they describe any additional efforts to address patient participation
beyond the point of reading the e-mail with the tool and guidance for how to promote person-centered
patient participation. Rather, the managers suggested that since their staff already provided for patient
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participation, they had no reason to suggest supplements; if the 4Ps was to be employed, the tool would
either conrm current practice or could potentially lend a more accurate representation of the patients’
perspective on patient participation, according to the managers. For any further activity, the managers in
the FIG suggested that they had appointed the IFs for such a commission.
For the IFs of the implementation support sites, there were opportunities to work with the implementation
at each site between program meetings. The IFs had focused on the tool suggested in the intervention,
the 4Ps, which was perceived as an aid to promote patient participation, by means of aiding the dialogue
between patients and staff. The three sites’ IFs addressed implementation in different ways, as illustrated
in Table 5.
Insert Table 5 here.
In one site, the IFs made a plan for the program’s implementation, starting with involving a few colleagues
while notifying their managers and all fellow staff about the program. After this, they included some
patients, although not as many as they initially planned to include. They described having support from
their managers, who emphasized the importance of all staff to work on program development and to
coordinate their efforts toward the same goal.
In two sites there were no strategic plans procured for the implementation. The IFs worked with
implementation but described it as spontaneous.
Why things worked (or did not work) and with what outcomes
The managers of the standard dissemination sites and implementation support sites referred to already-
established working methods for person-centered care, engaging patients in their care. However, they also
reected a lack of a common strategy and approach to patient participation.
For the implementation support sites, the data (that is, recordings and external facilitators’ notes) claimed
that the Ifs turned to the tool and its implementation, rather than to the more general issue of patient
participation; particularly person-centered opportunities to engage in one’s health and care issues as a
patient. Moreover, the external facilitators found the joint meetings of the program to initially aid local
progress, when the IFs shared what they had done and what had worked. However, over time, and
particularly in the third and nal joint meeting of the support program, the external facilitators identied
that the IFs compared themselves to each other, and to the status quo by claiming why they had not
made any similar attempts or actions.
The IFs described diculties in implementing the ideas they received from the program; they suggested
that they would have needed to spend more time and energy to make it work. In addition, the IFs
proposed that the intervention support program was too short; organizational factors such as too many
patients, a high workload, colleagues on sick leave and/or vacation, and staff shortages were considered
to hamper any implementation—in this case their implementation of the tool to address person-centered
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patient participation. Other parallel quality projects also made it dicult to engage colleagues in their
efforts to make the implementation of patient participation work in practice.
Furthermore, since the COVID-19 pandemic created a shortage of staff once the intervention came to an
end, the IFs did not have time to include as many patients as they had intended. On the contrary, the IFs
described that their units had to reallocate staff to other units. Only the most fundamental care was
provided, and patients’ physical care visits were cancelled whenever possible, protecting both the
individuals from risks and enabling staff relocation.
Overall, the IFs described their role as facilitators of the patient participation implementation as more
complex than they rst imagined. They appreciated the learning opportunity and acknowledged that they
had learned a lot from the support program (about both patient participation and knowledge
implementation). If asked again, they would accept such an IF assignment. They described that they had
learned more about their own attitudes and behaviors when engaging in direct patient encounters while
providing kidney care. This enabled them to focus more on the patient's agenda, which was considered a
new and different way of thinking, ensuring greater exibility for their patients. This was described as
dicult to incite in others but was considered more of an individual trajectory.
Despite their hardships, none of the IFs had asked for more support from their managers. Rather, noticing
how their own ideas of patient participation and the opportunities they identied to improve the standard
of care in their sites had altered—including addressing patients with regard to their preferences for and
experiences of participating, they suggested that changing the norms of their workplace would require
more time (rather than the six months that the intervention support program provided).
Discussion
While managers in this study described the kidney care context as commonly associated with patient
participation, the conceptualization of patient participation was previously found to vary [16]: not only did
patients and staff have different priorities [39], but patients suggested that the particulars of their
participation related to the type of healthcare contact and condition [15]. This calls for further dialogue in
healthcare encounters regarding enhanced person-centeredness in kidney care; this project aimed to
facilitate such amendments, with increased awareness, and means to sustain dialogue. The ndings
indicate a slow and unconvincing impact of the dissemination strategy, and some (albeit limited)
inuence in terms of added support to local facilitators.
Roughly 50% of kidney care patients have previously been found to have had opportunities for
participation matching their preferences, as almost every second patient did not, with every fth patient
having a complete mismatch between their preferences for and experiences of participation [8]. Still,
while both managers and the IFs appreciated the potential and actual support of the study, there were
limited actions taken beyond those pertaining to a few individual patients, and some staff. We suggest
this is primarily due to the innovation–context interplay [40] (but will return to the facilitation strategies
later):
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1. Regardless of the often frequent contact and long relationships established between patients and
staff, particularly in dialysis care, encounters in kidney care are charged with the many technical
aspects of lifesaving treatments. To have safe and effective procedures, processes have been
streamlined, sometimes failing to recognize the more person-centered aspects of the people who are
patients [15,41].
2. Patient participation is presumably a comprehensive concept, designating a humanistic stance for
more person-centered care[7], yet is potentially challenging to apprehend and convey in everyday
encounters without support [7,42].
Hence, it is reasonable that while both interventions aimed for a more general implementation of
improved conditions for preference-based patient participation, the tool was considered rst and
foremost. In hindsight, an alternative would have been to facilitate a patient-mediated intervention [43].
The potential of addressing patient needs merit further investigation, although the fatigue that often
occurs alongside severe chronic kidney failure [44] may exclude this option for patients undergoing
hemodialysis (but may work in self-administered dialysis or outpatient care when in predialysis).
The focus on the patient participation tool can also be seen in view of the implementation delity; i.e., the
degree to which the intervention was adopted and implemented as intended [45].The IFs appreciated the
support program, and while they described having altered their attitudes and engagement with their
patients, they neither had nor attracted the resources required to facilitate an adoption among their peers.
Rather, both managers (in standard dissemination, and in implementation support sites) as well as IFs
emphasized time as a crucial factor—here, a barrier—to addressing more person-centered patient
participation. Consequently, the focus of the IFs and managers can be the operative mode connotated by
the kidney care context, or simply a lack of time and energy to address a more major change in attitudes
and routines. The managers described a lack of time needed to carry out development and change
management, due to their busy everyday lives at the wards. Healthcare management means engaging
staff to craft a culture condent in making the necessary changes for the benet of better and safer care
[46]. Across these nine sites, the managers trusted staff to already facilitate patient participation, but the
IFs described it as hard to ensure that enough time was set aside to work on the implementation of
patient participation. This is consistent with ndings showing that time and work pressure are common
barriers to enhancing patient participation, and nurses tend to focus on their tasks rather than integrating
patients’ needs [47]. Another limitation highlighted by the IFs was staff shortage, making stang a
priority. This can procure an attitude among staff that their abilities to affect and change routines are
limited, which in turn can prevent their involvement in future implementation of new innovations. A task-
oriented management approach is known to hamper knowledge implementation [46], particularly when it
comes to changes to nursing practice in favor of more person-centered care [47]. This would need to be
further addressed in future projects and events.
Despite their hardships, the IFs grappled with the intervention on their own. The managers, on the other
hand, expressed that there was a lack of a common strategy and approach in terms of patient
participation at their units. This indicates a need for a stronger relationship between managers and
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facilitators in knowledge implementation [46,48]. This has lately been highlighted as a need to address
both rst-line managers, and upper-level management to facilitate implementation [49,50]. Promoting a
fair context and scaffolding a person-centered context, managers’ attitudes to change need to focus on
improvement processes, with rst line managers acting as role models if and when new methods and
evidence are introduced [51,52].
The facilitator role is complex, requiring knowledge both about implementation and the innovation in
particular [53]. Efforts to facilitate IFs in this context and/or with the intention to improve person-centered
conditions for patient participation would presumably benet from a more detailed mapping of their
barriers, including attitudes about the innovation and other contextual factors, boosting IFs’ ability to
tailor plans to bridge obstacles, and to envisage what enabling factors are available and/or can be
accessed [45,49].
Methodological considerations
In spite of the intervention data on the planned and procured dissemination and support program, in
addition to the IFs’ diaries and the interviews, it was dicult to capture how the IFs adopted and
proceeded with the implementation in more detail. An alternative route suggested is non-participant
observations [54] or additional interviews. However, the former is resource-intense and both observations
and additional interviews could have had a potential impact on the implementation by means of further
support [28]. Although the data collected by the IFs diary notes was scarce (and described mostly
practical activities), the content and structure still pictured the task-oriented approach chosen by the IFs
(even if only three of the ve IFs completed a diary, and thus any generalization of their plans should be
interpreted carefully).
A mixed methods design provides the prerequisites for a better understanding of the implementation
processes and outcomes, as well as its context and mechanisms [10]. The nuances captured by both a
survey, and interviews across all sites provided a picture of important contextual factors [52], such as
available resources. Furthermore, there were negligible differences in organizational context according to
results from the ACT analysis, making the three groups comparable. Still, the interviews with the
managers were guided by queries about patient participation at a general level. Without specic
questions about the implementation process, details may have been lost. On the other hand, this
approach ensured that the researchers who conducted the interviews were neither informed of nor biased
by which intervention group the interviewees belonged to. Rather, a deeper understanding of both the
contextual factors and reach of the intervention(s) would have been facilitated by staff interviews, which
could have proved illuminating if they had been addressed by the IFs, including how and what they noted
as their efforts and levels of commitment.
Conclusions
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Changing staff attitudes towards more person-centered patient participation has and will likely take time
and require joint efforts, requiring a supportive healthcare environment for both patients and staff, and
the adoption of change-oriented leadership [46,51].Our ndings reinforce that IFs should serve in pairs or
in teams, collaborating with management [46]; managers are vital in balancing external requirements with
internal processes, and in encouraging and implementing new ideas [55].
Knowledge implementation is acknowledged as complex, even if the innovation to be implemented is
well-known and appreciated. In this study, both managers and IFs had a positive attitude regarding
patient participation, but the IFs described limited readiness for preference-based patient participation.
While all sites' managers suggested that patient participation is innate in the kidney care context, a
perceived lack of time and a lack of relevant mandates hampered both managers and IFs when it came
to facilitating more person-centered conditions. However, the IFs partaking in the support program
increased their knowledge and understanding, which helped them reconsider how they enabled patient
participation. This indicates a slow uptake and change, with benets for just some patients. More
ecient strategies are needed to ensure fundamentals of care are accessible for all.
Abbreviations
CG Control group
FIG Facilitated Intervention Group
IF Internal Facilitator
SDG Standard Dissemination Group
Declarations
Ethics approval and consent to participate
Ethical approval was obtained by the Regional Ethical Review Board of Linkoping, Sweden (ID2019-
02748 and 2020-04296). Informed consent was obtained from all study participants and they agreed to
the representation of ndings at site level (without identifying details for individuals).All methods were
carried out in accordance with relevant guidelines and regulations.
Consent for publication
Not applicable.
Availability of data and materials
The datasets used and/or analyzed during the current study available from the corresponding author on
reasonable request.
Page 15/25
Competing interests
The authors declare that they have no competing interests.
Funding
This study was supported by research grants from the Medical Research Council of Southeast Sweden
(FORSS-930678, FORSS-939775 and FORSS-968285) and the Swedish Kidney Foundation (F2018-0036).
Authors’ contribution
LÅ and ACE planned the project and ACE supervised the data collection and analysis; LÅ collected the
data, with assistance of a PhD candidate, and LÅ performed the analysis and process evaluation. FU
analyzed the ACT data. LÅ drafted the manuscript, in dialogue with ACE. All authors contributed to the
discussion of the emerging ndings, and provided input to the nal manuscript.
Authors and aliations:
Liselott Årestedt1 RN, PhD, Senior lecturer (Corresponding author)
Fredrik Uhlin2,3,4 RN, PhD, Associate Professor
Ann Catrine Eldh2,5 RN, PhD, Professor
Aliations:
1Faculty of Health and Life Sciences, Department of Health and Caring Sciences, Linnaeus University, SE-
39182 Kalmar/Växjö
2Department of Health, Medicine and Caring Sciences, Linköping University, SE-581 83 Linköping,
Sweden.
3Department of Nephrology, Region Östergötland, SE-581 85 Linköping, Sweden.
4 Department of Health Technologies, Tallinn University of Technology (TalTech), EE-19086 Tallinn,
Estonia.
5Department of Public Health and Caring Sciences, Uppsala University, Box 564, SE751 22 Uppsala,
Sweden.
The study was conceived and designed by LÅ, FU, and ACE. All authors participated in the data analysis
and have read and approved the nal manuscript submitted for publication.
Acknowledgements
Page 16/25
PhD candidate Caroline Hurtig (CH) was involved in the data collection, performing managers’ and IF
interviews, for which the team of authors are very grateful.
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Tables
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Table 1.Overview of the intervention components, delivered to the facilitators of the three intervention
sites.
Page 21/25
Type of
session Date Content Purpose Where Who
Workshop 21
October Patient
participation,
general
patient
participation in
kidney care,
knowledge
implementation
re:
experiences of
improvement and
change
Introduction and
seminars Conference
center Joint, all
IFs plus
the two
external
facilitators
Workshop 22
October Making an
implementation
plan
Capturing and
evaluating
processes and
outcomes
Further
intervention
support
Recap and
reections
Planning and
procuring plans
for
implementation
Conference
center Joint, all
IFs plus
the two
external
facilitators
Teleconference 19, 21
and 25
November
What has been
done, how, for
whom and with
what outcomes
Reections on
barriers and
enablers, plan
forward
ZOOM Per site
(IFA2
absent)
Teleconference 19
December What has been
done, how, for
whom and with
what outcomes
Reections on
barriers and
enablers, plan
forward
ZOOM Per site
(IFA1
absent)
Teleconference 21
January What’s working,
why or why not Sharing
experiences, plan
ahead
ZOOM Joint (IFA1
absent)
Teleconference 20
February A further
understanding of
patient
participation
Tackling barriers
among fellow
staff and patients
ZOOM Joint
(IFB2
absent)
Teleconference 24 March What have we
learned and where Experiences of
change
management and
ZOOM All
Page 22/25
do we go from
here learning
opportunities
Table 2. Participants Managers.
Group Manager (M) and Case
(A–I) Sex Position Interview
date
Facilitated Intervention Group
(FIG) MA Woman Manager 10/04/19
04/28/20
MB Woman Manager 191007
04/15/20
MC1 Woman Manager 10/04/19
05/06/20
MC2 Woman Deputy
manager 12/19/19
04/29/20
Standard Dissemination Group
(SDG) ME / F Woman Manager 12/11/19
05/13/20
MI Woman Manager 12/18/19
04/22/20
Control Group (CG) MD Woman Manager 10/03/19
04/21/20
MG Woman Manager 10/02/19
04/16/20
MH1 Woman Deputy
manager 10/08/19
04/14/19
MH2 Woman Deputy
manager 09/30/19
04/27/20
Table 3. Participants- Intern Facilitators.
Page 23/25
Sex Profession Type of Kidney care Diary notes No. of interviews
Case A IFA1 Woman Nurse Predialysis x 2
IFA2 Man Nurse Hemodialysis x 2
Case B IFB1 Woman Nurse Hemodialysis - 2
IF B2 Woman Nurse Hemodialysis - 1 and 2
Case C IFC Woman Nurse Predialysis x 1 and 2
Table 4.Data collected and employed for the process evaluation.
Page 24/25
Data source Type of data No. of participants Amount of
data
Interviews,
managers Verbatim transcripts,
text Ten (across nine sites)
129 pages
(single space)
Interviews,
internal
facilitators (IFs)
Verbatim transcripts,
text Five (across three sites)
86 pages
(single space)
The clinical
intervention tool
and its support
for
dissemination
4Ps Distributed via e-mail to six
managers and their head of unit (in
the standard dissemination group
(SDG) and the facilitated intervention
group (FIG) sites, respectively
The 4Ps: two
plus two
pages
The
accompanying
e-mail cover
letter (1 page
per type of
site)
User manual
for the 4Ps (2
pages)
10 PPTs for
dissemination
Training and
support material
for IFs in the
facilitated
intervention
group (FIG)
PowerPoint slides
plus description of the
purpose and
theoretical foundation
of program
components
Immaterial 43 pages
Notes from
training and
support
sessions
Handwritten
reections of the
researcher in charge
of the training and
support program
Immaterial Eight pages
Recordings from
all training and
support
sessions
Voice recordings Immaterial 11 hrs and 19
minutes
IF diaries Copies of handwritten
or Word documents Immaterial 28 pages
Alberta Context
Tool Survey 78 nurses (out of 98 responding
staff) across 8 sites[1] 78 surveys
Table 5 Intervention site activities, described by internal facilitators.
Page 25/25
Case Activities IFs reections
ARegular reconciliations between the IFs
Informed managers and other colleagues,
used a ppt
Involved other nurses early in the process
Started on a small scale and then
expanded with more nurses
Adapted information to included nurses
Had follow-up meetings
Tried different approaches to involve
patients
Estimated time spent: a couple of hours a
week
Did not experience any problems to
reach out with information
Managed to keep the common thread
It turned out as planned but with
fewer included patients
Lack of control over which patients
were included
A fun and exciting project
BDid not prioritized the project
Talked about patient participation on a
workplace meeting
Estimated time spent: short discussions, a
few minutes, between the two IFs
Wish they have done more activities
and spent more time on the
implementation
Clearer leadership would have been
needed to succeed
CWorked on the intervention by herself
Informed colleagues about the project
Estimated time spent: a couple of hours
each week, had to do it alongside ordinary
duties
Diculties reaching and including
other staff
Lack of time and staff shortages at
the unit
Alone in her role as an IF
IFs expectations and ambitions were
not met at the workplace
Developed own ability for self-
reection
[1] Two sites are run by the same staff on rotation, with the same management.
Supplementary Files
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