Twenty of 58 invited (34%) healthcare professionals participated in the focus groups, which included 5 of 24 (21%) general practitioners, 9 of 20 (45%) home nurses, and 6 of 14 (43%) physiotherapists. All participating physiotherapists had a specialization in lymphatic drainage (Table
1). Seventeen of the participating healthcare professionals were female (85%). Participating healthcare professionals had between 1 and 160 patients who had surgery after a diagnosis of breast cancer in the past year, with a median of 4 to 5 patients. Eight healthcare professionals described a special experience with breast cancer, meaning that they had worked at an oncology department in the past (N = 2), treated many breast cancer patients in the Netherlands (N = 2), had had breast cancer themselves in the past (N = 2), were the chairman of the league for cancer (N = 1), or were involved in the development of a care pathway for patients who had surgery after a diagnosis of breast cancer, and had completed training for palliative care (N = 1).
Table 1
Participant focus groups
Focus group 1
|
Invited
| 4 | 4 | 2 | 10 |
Confirmed
| 2 | 3 | 1 | 6 |
Participated
| 0 | 1 | 1 | 2 |
Focus group 2
|
Invited
| 4 | 3 | 1 | 8 |
Confirmed
| 2 | 2 | 1 | 5 |
Participated
| 0 | 2 | 1 | 3 |
Focus group 3
|
Invited
| 4 | 3 | 2 | 9 |
Confirmed
| 1 | 2 | 1 | 4 |
Participated
| 1 | 2 | 1 | 4 |
Focus group 4
|
Invited
| 4 | 3 | 3 | 10 |
Confirmed
| 2 | 2 | 1 | 5 |
Participated
| 1 | 0 | 1 | 2 |
Focus group 5
|
Invited
| 4 | 3 | 3 | 10 |
Confirmed
| 3 | 2 | 1 | 6 |
Participated
| 2 | 1 | 1 | 4 |
Focus group 6
|
Invited
| 4 | 4 | 3 | 11 |
Confirmed
| 2 | 5 | 2 | 9 |
Participated
| 1 | 3 | 1 | 5 |
Total number invited
| 24 | 20 | 14 | 58 |
Total number of participants
| 5 | 9 | 6 | 20 |
Experiences of care coordination
All 15 previously identified key concepts were found and further explored in healthcare professionals’ experiences of care coordination. Additionally, six new links between key concepts relating to (inter)organizational mechanisms and three new links with “external factors” were identified. The results below focus mainly on the newly identified information that enhanced our understanding of key concepts of care coordination and the newly revealed links.
External factors
The social security system, current legislation, and existing resources were confirmed to be external factors in healthcare professionals’ experiences about care coordination. Two external factors were newly identified:
1)
physiotherapists in three focus groups 1, 2, and 5 mentioned (the lack of) evidence about lymphatic drainage;
2)
Participants in focus group 6 mentioned the current positive media coverage including several famous people who have survived (breast) cancer.
There still isn’t evidence for oedema, but I believe in it. If you remove the lymphatic nodes under the armpit and you don’t begin to drain this from the start, the fluid has to find its way. If you start to show the way for the fluid to drain from the beginning, then channels are built. There is fluid. I really believe in it. (Focus group 1, region 1, participant 2, physiotherapist).
My mother had breast cancer many years ago. She told no one because in those days you were doomed if you had breast cancer. Now, breast cancer gets a lot of media coverage, with some famous people having had breast cancer, leading to better treatment adherence (Focus group 6, region 3, participant 16, home nurse).
Patient characteristics
Coping strategies and social network were confirmed as patient characteristics. Four new types of patient characteristics were identified:
1)
patients’ personality traits like assertiveness versus resignation, open versus closed, control versus doubt, stubbornness versus docility;
2)
generational differences like different familial relationships, openness to discuss issues, access to information sources;
3)
expectations of patients towards healthcare professionals or the care provided;
4)
Other characteristics such as knowledge, education, and motivation.
Some patients talk about it, others don’t. Some patients want to see the wound, others don’t. I know a lady who didn’t want to look in a mirror. (Focus group 6, region 3, participant 16, home nurse).
I think there is a difference between older women who have breast cancer and younger ones. We are familiar with the internet, etc. People aged over 70 years who have breast cancer are not familiar with this, and they have a totally different mentality concerning family. I think we should keep a closer eye on these people. (Focus group 6, region 3, participant 16, home nurse).
Patients expect a lot of knowledge. It is not always so obvious to answer their questions. In primary care, we have a lot of different patients; patients with psychiatric problems, patients with heart diseases, etc. We see a lot. It is not easy to know everything (Focus group 1, region 1, participant 1, home nurse).
“Generational differences” were not stated in region 2. “Other” patient characteristics were mentioned by only one participant.
(Inter)organizational mechanisms
All six previously identified (inter)organizational mechanisms were found and further explored in healthcare professionals’ experiences.
Task characteristics
The complexity of the task and time-pressure were confirmed as task characteristics. The familiarity of healthcare professionals with the task was revealed as a new task characteristic. Primary healthcare professionals are confronted with many different conditions, whereas hospital healthcare professionals specialize in only one. Consequently, primary healthcare professionals had fewer patients with breast cancer and were less familiar with the tasks they had to perform.
It is difficult to gain experience and know what you have to do if you only have one patient per year. (Focus group 4, region 2, participant 11, family doctor).
Structure
Four physical and organizational aspects that support and direct care were confirmed in healthcare professionals’ experiences; the high number of participants, existing mechanisms for coordinating care, the pre-existing relationship with the patient, and the way healthcare professionals organize work. Also, four new structural aspects were identified:
the high variability of involved primary and hospital healthcare professionals;
the lack of administrative and logistic support in primary care;
the poor accessibility of hospital doctors;
and; the regular contacts of the patients with the hospital, home nurses and physiotherapists.
I think it is very important that you work with a more or less fixed team. Now, you say [to the patient], “find a healthcare professional, do whatever…” (Focus group 1, region 1, participant 1, home nurse).
In primary care, we need more structural support for our administration. (Focus group 4, region 2, participant 11, family doctor).
You really should call the hospital and try to contact the oncologist… So our patients call us, and we try to solve the problem. If we can’t, then I sometimes call the hospital. (Focus group 4, region 2, participant 11, family doctor).
Healthcare professionals who frequently visit the patient; know the patient; see how the patient lives, speaks, and what questions she has; talk to the patient during care; teach the patient how to deal with the pain and mutilation and ease the patient. That’s essential and irreplaceable. (Focus group 6, region 3, participant 19, family doctor).
Participants confirmed two previously identified factors related to knowledge; expertise and experience to undertake the procedures for breast cancer treatment, and communication skills towards the patient.
Two new aspects of knowledge were revealed:
knowledge about the services and expertise of others;
and which primary or hospital caregivers were involved.
If patients call, they almost never ask if I can perform lymphatic drainage, so I suppose that there are patients who end up with physiotherapists without this expertise. (Focus group 6, region 3, participant 18, physiotherapist).
We need information about where the patient is and who is involved with the patient. (Focus group 5, region 3, participant 15, family doctor).
The family doctors confirmed the importance of the support of information technology. In one region, some family doctors could consult the patient’s hospital record.
I usually consult the patient’s hospital file. I can log in into the computer of the hospital to determine which patients are hospitalized and which patients are discharged. […]. It is necessary if you want information about certain tests on time, but it is time-consuming. (Focus group 5, region 3, participant 15, family doctor).
One physiotherapist had a good experience with a shared electronic patient file for healthcare professionals and insurers in the Netherlands.
Administrative operational processes
Standardization and adaptation of the care process were confirmed as important aspects of administrative operational processes. According to the participants, the care process was mainly adapted by phone. Multidisciplinary meetings were considered important, but were not often organized, except in certain local communities.
Cultural factors
The attitude of the healthcare professionals towards patients and the attitude of the patients were confirmed as “cultural factors”. The willingness to cooperate was revealed as a new cultural factor, relating to the attitude of healthcare professionals towards other healthcare professionals. Examples of healthcare professionals not willing to cooperate were mainly related to hospital doctors who were perceived as believing that they were superior, focusing only on their own specialty without attention to other aspects, not recognizing the expertise of other healthcare professionals, and acting annoyed when other healthcare professionals asked questions.
I personally believe that they sometimes have blinders. It is like “I’m only performing this operation and that is for the after-care” (Focus group 2, region 1, participant 4, home nurse).
Need for coordination
“Need for coordination” was confirmed. No new information about the need for coordination was identified.
Relational coordination
All four previously identified concepts of relational coordination were found in healthcare professionals’ experiences: (1) the definition and awareness of “roles”; (2) “quality of relationship” between healthcare professionals and with the patient; (3) timely, accurate and problem-solving “exchange of information”; and (4) setting of common “goals”. “Roles”, “quality of relationship”, and “exchange of information” were identified as core key concepts of care coordination, since they appeared frequently in the data and were linked with most key concepts. The concept “goals” was identified in only one region.
Participants of the focus groups indicated that they experienced a gap in bridging primary and hospital care and in coordinating the primary care. It was unclear who performed this role: the hospital doctor, the specialist nurse, the family doctor, the patient, an engaged healthcare professional, a social assistant or no one. The participants experienced low “quality of relationship” between healthcare professionals, although participants in two regions provided examples of good collaboration with mutual respect. Bond and trust were confirmed as two important aspects of the “quality of relationship” with the patient. All participants stressed that there was a lack of exchange of information, even communicating information towards professionals was deficient.
In my experience, there is no direct information exchange. As a healthcare professional, you have to pick up the phone and call. (Focus group 3, region 2, participant 6, home nurse).
Only participants in region 1 mentioned the setting of common “goals”. Participants in focus group 1 noted that healthcare professionals formulated their own goals together with the patient. They indicated that general goals should be formulated by the family doctor starting from the treatment protocols in hospital. Participants in focus group 2 stated that it was difficult to formulate goals due to the uncertainty of the care process and the disappointments of the patients when goals were not reached. Sharing of goals with other healthcare professionals or the patient was not mentioned.
You formulate goals, but when they are achieved also depends on the patient […] The more you formulate goals, the more disappointment you will encounter if they have not reached the goal (focus group 2, region 1, participant 5, physiotherapist).
Outcome
Patient, team and (inter)organizational outcomes were confirmed and further explored. Continuity of care, the health status and psychological wellbeing of patients were identified as patient outcomes. Being part of a group of specialized healthcare professionals was considered a positive team outcome. However, most healthcare professionals were not involved in such a group, meaning that the healthcare professionals mainly acted independently of each other with little involvement between them, and little knowledge of who did what or what could be expected, with the possible consequence of looking unprofessional and creating conflict between healthcare professionals.
Every doctor has his own habits and procedures. There are doctors that you can call between 11 am and 12 am but not after 12 am. If you don’t know the doctor and you call after 12 am, you’re screwed. Next time you call this doctor, it is painful. Maybe the doctor didn’t know that I wasn’t aware of the fact that I couldn’t call after 12 am. This leads to conflicts. If you have a group of people in this region who are specialized and work together, then it runs smoothly. (Focus group 1, region 1, participant 1, home nurse).
Care running ‘like a well-oiled machine’ was identified as (inter)organizational outcome, meaning all steps in the care process were done by different healthcare professionals (in different organizations and settings), and follow each other quickly and smoothly (no long waiting periods).
A first step is that we quickly refer to the hospital when we find something suspicious. In my practice, a mammo often happens in the periphery. Quality of care means that you don’t have to wait too long when there is a suspicious mammo. (Focus group 5, region 3, participant 14, family doctor).
Identified links between key concepts
Links with other concepts
The previously identified link between “patient characteristics” and “need for coordination” was also found in healthcare professionals’ experiences of care coordination.
It also varies from patient to patient. There are a lot of differences between people. There are people who resolutely take control, and there are people who have a naturally doubtful personality. It always varies from person to person. (Focus group 6, region 3, participant 16, home nurse).
The previously identified links between “external factors” and three (inter)organizational mechanisms were found and new links between “external factors” and “task characteristics”, “administrative operational processes”, and “need for coordination” were identified. For example: the social security system, current legislation, and existing resources (“external factors”) were related to the experienced time-pressure of the healthcare professionals (“task characteristics”), no or few multidisciplinary team meetings to adjust care (“administrative operational processes”) and the experienced “need for coordination”.
The big problem in primary care is that sometimes, I experienced it myself, you are too busy. If you want to care for chronically ill patients well and give them attention, then you have to make time. If you don’t, you will lose certain aspects, and you have to drop things. You need more resources to do it well; like for diabetic patients where we have someone who arranges practical things […] I would like to have more time to contact the home nurse to exchange information and arrange care. But, I can’t call everyone. If I could, I would ask a secretary to call the physiotherapist, home nurse, and home help to arrange a meeting to organize care at home. (Focus group 4, region 2, participant 11, family doctor).
Links between (inter)organizational mechanisms
All six (inter)organizational mechanisms were linked with each other, meaning that all 9 previously identified links were confirmed and six new links were revealed. A link was identified between “cultural factors” on the one hand and “task characteristics”, “structure”, “knowledge and information technology”, and “administrative operational processes” on the other hand, and also between “structure” on the one hand and “knowledge and information technology” and “administrative operational processes” on the other hand. For example, the willingness of healthcare professionals to cooperate or their commitment to the care of a patient (“cultural factors”) is linked to their workload (“task characteristics”), the way they organize their work (“structure”), gaining “knowledge”, using available “information technology”, and contacting another healthcare professional to adjust care (“administrative operational processes).
You have to discuss everything with the others. If there is something that you don’t know, you have to refer the patient or gain information from someone who does know. You have to know your own boundaries. I don’t have any problems giving a patient a note to ask if that’s normal. (Focus group 1, region 1, participant 2, physiotherapist).
Links between concepts of relational coordination
The previously identified links between “roles” on the one hand and “quality of relationship” with the healthcare professionals and with the patient, “exchange of information” and “goals” on the other hand were confirmed. Also the previously identified links between “exchange of information” on the one hand and “quality of relationship” on the other hand were identified.
It is unprofessional if you arrive at a patient’s home and you don’t know the medical history and you don’t know anything. It doesn’t give much confidence to the patient. (Focus group 3, region 2, participant 6, home nurse).
Links between (inter)organizational mechanisms and concepts of relational coordination
All previously identified links between (inter)organizational mechanisms and “roles”, “quality of relationship”, and “exchange of information” were found except for “task characteristics” for which we only found a link with “roles” and “exchange of information”.
I have half an hour per patient. I think home nurses have less time. During this time, the patient talks and knows that she can ask questions. If there is something I don’t know I refer them to the home nurse or the family doctor. Once they know you from the start, they know they can ask you questions. (Focus group 2, region 1, participant 5, physiotherapist).
Links with outcome
Outcome was related to “roles” healthcare professionals perform, the “quality of relationship” between healthcare professionals and with the patient and “exchange of information”. Participants also indicated that “patient characteristics”, like patient personality, influenced “patient outcome”.
Why do things go wrong? If patients come too late, if patients mention problems too late… (Focus group 2, region 1, participant 5, physiotherapist).