Staff experiences of implementing the model to increase patient involvement and autonomy
in hemodialysis care are presented in three main themes: (1) Intent to change approach;
(2) The importance of supervision and reflection; and (3) Changes achieved through
the project.
Intent to change the approach to care
The analysis revealed that there was a perception among the ward leaders and among
some of the RNs that the care did not really give the patients enough support to be
involved and to take responsibility for their treatment and health. This perception
was confirmed by the former patient’s statement about care. This mutual impression
of care made the ward leaders aware of the importance of mutual learning among staff
in order to change the approach to care among them. They also acknowledged the importance
of arranging meetings between researchers and staff to enable this learning. The ward
leaders also recognized the fact that the aim and content of the project was in line
with the hospital’s overall goal of working in a person-centered way, with one person
saying:
“This was something that we wanted to invest in, which we felt was along similar lines
to earlier initiatives.”
The desire to change the caring approach was articulated by the leaders, who saw potential
in the interest expressed by the staff in developing new approaches to care, as well
as the fact that there were resources available. In other words, “it was the right
time” to implement a new approach. They believed that the unit offered unique opportunities
for building this kind of caring relationship, since the nurses met the patients on
a regular basis. There had already been several discussions in the unit about how
to help the patients to make healthy changes in their daily lives:
“We had a lot of discussions [among staff] about patients who had problems with, for example, weight [in relation to fluid balance and kidney failure]. We talked about how we as nurses should be able to reach out to the patient and
engage in a good discussion about not gaining as much weight, so they don’t get this
recurring problem, so to speak.”
The willingness to change the caring approach was supported by the view so clearly
expressed by the former patient. This patient believed that the research and the model
developed through research would be useful for the nurses.
“He would have liked someone to ask him these kinds of questions when he looked back
on his experience as a patient in this unit.”
One of the leaders said the following about the model and the willingness to alter
the caring approach:
“This is not lecturing, but it’s up to the patient to look inside himself and reflect
on ‘how am I going to cope with this in a good way?’ So it doesn’t end up with me
as a nurse saying, ‘you need to do this and that.’ That doesn’t usually work.”
The model fits the need to increase communication with patients in a person-centered
way. The leaders valued this and perceived the need for more knowledge and skills
among the staff. They saw the model as consistent with patients’ requests to influence
their own care, which places new demands on staff. They identified the model as congruent
with their ideas about developing person-centered care in the unit:
“Today’s society is based on knowledge and it is easy to get hold of information and
knowledge, but we also have to offer other tools to manage this information.”
Staff explained that their experience of participating in a former research project
on empowerment had helped them to understand that they could not simply give the patients
power, but that the way in which they, as nurses, acted could influence outcomes.
The participants also suggested that the caring culture of the unit was unsupportive
of patient empowerment. The main focus of staff was being responsible for the patients’
treatment but without really involving them. One of the participants gave an example
of how she talked to the patients: “Today, I’ll take care of you, Anna. Don’t worry,
just relax.” This attitude may be counterproductive for the patients’ health, because
it does not provide patients with the tools to manage their health at home. There
is an awareness of these difficulties, and the staff see empowerment and Motivational
Interviewing (in which some of the nurses have been trained) as useful in helping
patients to become more active in their treatment and to improve their well-being.
In reaching this understanding, it was expressed that both staff and patients must
change their views on the aims of care. This insight, and the ward leaders’ wish to
use research in practice to change care, determined the use of the model.
A willingness to change the caring approach is crucial for the implementation of a
new way of thinking and acting. This was revealed since some of the nurses did not
participate very actively in the project. One of them stated that she was already
competent in undertaking a caring dialogue with the patients. The leaders, however,
were convinced that everyone needed to develop skills such as learning to ask the
patients more questions. They were also aware of their failure to motivate the entire
group. For example, one of the nurses who chose not to participate said that she felt
that the project should have been preceded by a democratic process where the staff
decided together about the project: “All of a sudden, we were just a part of it [the
project]… I didn’t feel that it was ok.” The same nurse also found it difficult to
imagine working from any models, saying, “No, this model … it is really hard for me
to practice a model.”
The leaders were confident that the participating nurses were driven by curiosity,
openness and a willingness to change their caring approach and actions. During the
project, it became obvious that the participants saw their limitations and need for
development. They all stated that they had learned to talk with patients in a new
way and that reflection and learning together had been valuable for this.
Importance of supervision and reflection
During the process of finding out how to carry out dialogues that were supportive
of patient learning, the importance of supervision and reflection were highlighted
by both the participants and the leaders. During the group supervision sessions, they
reflected on their experience of dialogue with patients in relation to the model.
Both their own and their colleagues’ actions, the needs of the patients, and the application
of the model became obvious to the participants. One said: “I feel I had a Eureka
moment.” She explained that suddenly, the differences between her goals and those
of the patient had become obvious.
The participants said that the sessions had led to new approaches in their dialogue
with patients. By being able to clarify various objectives, the participants established
a better understanding between themselves and the patients. During the sessions, they
discussed how their skill in directing the dialogue with patients had improved:
“In general, we don’t ask explorative questions. Instead we are schooled to solve
problems, so it’s kind of hard to change perspective.”
Another participant said, “For me it has been an eye-opener.” By learning to ask questions,
a different picture of the patient’s situation emerged. One question described as
important was: “What are your expectations of me?” This question provided the opportunity
to meet the patient on a new level, “more as a human being”, with their own goals
and life in addition to the disease. During supervision, the participants began to
understand that they needed to develop their faith in the patient’s inherent capabilities
and find ways to communicate this belief to the patient.
During the group supervision sessions, the participants were coached in adopting a
tactful attitude when meeting patients. They learned to meet the patient in the present
moment, and start each dialogue by asking patients to talk about their current situation
(i.e., here and now). This was experienced as an opportunity to challenge the patients’
understanding of the situation and the consequences of their own actions. The participants
identified “the curious inquiring attitude” as being especially important. This could
provide a shift in the dialogue, when the patients became aware of their significance
as an individual and started talking about themselves as “I” instead of as “one” in
general. During the group supervision sessions, the participants said that they had
acquired the courage and tools to enable them to reflect and go deeper into the dialogue,
challenging patients’ understanding and actions.
“And something X taught me, which I have used a lot, is to support the patient’s self–confidence, and I have even found myself going from ‘one’ to ‘I’ when I talk…”
As well as the group supervision sessions, the ambition was to have frequent reflection
meetings. Many meetings were canceled, however, because of staff workloads. The group
supervision sessions and the reflection meetings were scheduled but not mandatory
for participants. Those who were working and could get there participated. As a result,
the reflection meetings involved different people from one session to another, which
the RL described as difficult:
“Not everyone has been positive about attending but others have found it absolutely
fantastic.”
The RL described how, in the beginning, it was difficult for the participants to know
what to bring to the meetings and reflect upon. This changed over time, as participants
described how they had developed their abilities to reflect, express themselves, ask
questions, and capture the small situations in everyday life as well as seeing the
importance for patients’ learning.
The reflection meetings and the group supervision sessions gave the participants a
sense of reciprocity; they shared experiences and learned from each other. The RL
felt that it was an advantage that she was not involved in the patients’ care, which
gave her the opportunity to ask naive questions. During the meetings, it became obvious
how the project was influencing the participants, with one saying that she had started
to reflect in a new way on her role as a nurse:
“I am thinking about how to help the patient in their life more generally. Previously,
I was so oriented on helping them with their treatment and doing it as well as possible
but now it is about helping them to take charge of their own lives.”
Through the written stories, it was possible to follow the participants’ progress
and witness a more in-depth ability to reflect on their own role in particular situations.
At the beginning of the project, the stories were about the control of blood sugar,
phosphate, beverages, dietary guidelines, and the patients were perceived as passive
recipients. The participants described how they tried to explain, inform, show test
results and get help from other professionals to give the patient the best possible
care, but “The patient was very negative and did not want to be told about the disease.”
In the middle of the project, the stories became more about the patient’s fears, anxiety,
anger, resistance and responsibility, instead of giving information to the patient.
The participants wrote about how they involved the patients in their care:
“The patient told me that last night she felt that her arm was cold. She thought she
was going to die. During the next dialysis session, I listened and then asked if she
had felt afraid of death.”
In the final stories, the perception of the different goals of patients and participants
was described, as well as how these differences affected relationships. The stories
also described how the participants challenged unrealistic views or expectations among
some patients, or confronted patients showing risky behavior, explaining how this
behavior affected other patients in the unit.
In the stories, the participants described their choices, as well as discussing respect
and expectations. These descriptions correspond to the learning supportive approach
in the model and the intention to change approach and let the patient take charge
of his/her own life. Group supervision sessions and reflection meetings were crucial
to this change; the sessions facilitated the participants’ progress through reflection.
Changes achieved through the project
At the beginning of the project, the model was perceived as abstract and difficult
to understand. The supervision and reflection sessions were crucial for the participants
as they enabled understanding (i.e., moving from theory to practice and increasing
understanding of practice in relation to theory).
The participants’ experiences of dialogue with patients were the basis for the reflection
meetings and group supervision sessions. During the group supervision sessions, the
understanding of practice deepened as the meaning of the model became visible. The
participants described the model as an approach used in challenging patients to become
involved in their care and to take charge of their lives when living with a chronic
life-threatening disease. The participants felt that this changed attitude in meetings
with the patients seemed to support patients to participate in decisions about goals
of care and appropriate measures. This required a change in practice among the participants,
which in turn required support in the group supervision sessions.
Among the participants, there was a sense of disappointment which was also expressed
by the leaders and the RL that not everyone joined the project and actively worked
with the model. The leaders developed a consensus that the process was difficult,
would take time, require supervision and need work on a long-term basis to achieve
change. The model was perceived as a necessary tool to make care more patient-centered.
From an initial feeling that changing was a difficult task, the participants moved
to understanding the model and embracing it during dialogue with patients and when
reflecting on their experiences during supervision sessions. The experience of implementing
the model has, from the staff’s perspective, not been easy but has led to increased
self-confidence and feelings of deepened competence in dialogue with patients. Staff
also perceived increased patient involvement and patient autonomy in hemodialysis
care in the unit.