Background
Aim and research question
Methods
Design and setting
The case hospitals
Context | Hospital A | Hospital B |
---|---|---|
Localization | Large city in Norway | Large city in Norway |
Case hospital | University hospital Local hospital for 330.000 inhabitants Second largest regional cancer department | University hospital Local hospital for 420.000 inhabitants Largest regional cancer department |
Employees | 7500 | 12,000 |
Budget | 6,8 billion NOK | 10,8 billion NOK |
Data collection
Hospital A | Hospital B | ||
---|---|---|---|
Meso level (managers) | Meso level (managers) | ||
Consultant | 1 | Consultant | 2 |
Nurse | 2 | Nurse | – |
Oncology nurse | 3 | Oncology nurse | 4 |
Quality manager | 1 | Quality manager | – |
Micro level (healthcare professionals) | Micro level (healthcare professionals | ||
Consultant | 2 | Consultant | 2 |
Nurse | 4 | Nurse | 2 |
Oncology nurse | 3 | Oncology nurse | 6 |
Total | 16 | Total | 16 |
Analysis
Results
Context – National policy
Structural challenges
Lack of systematic approaches for next-of-kin involvement
Most methods focused on how to inform next-of-kin, but the methods did not have systematic means of guidance or educating next-of-kin in knowledge, attitude and practices relating to quality and safety.We are offering next-of-kin conversation or family meetings all the time if the patient wants to bring their next-of-kin. (Consultant)
Next-of-kin as quality and safety resources
Next-of-kin are very important during the course of treatment. For example, how safe it is for the patient to go home in neutropenic phase depends on whether they live alone or if they have careers who can act, help and support. Next-of-kin are a very important piece in addition to all emergency personnel in the municipalities, such as nurses, consultants, mobile palliative care team, nursing homes, or homecare services. (Consultant)
If it wasn’t for next-of-kin, the schedule would be disrupted. That could affect other patients with delayed medical care, food, and personal care. (Cancer nurse)
Lack of continuity reduces next-of-kin involvement
We have received letters from both patients and next-of-kin who argue that it is tiring to deal with new faces every time they come to the clinic. They come every 14 days, and haven’t seen the same consultant in the last 16 weeks. It is pretty bad! (Registrar)
Political challenge
Lack of interdisciplinary collaboration hampers next-of-kin involvement
In Hospital B, registrars are rotated according to the day’s resource needs. As a result, registrars often discharged patients they had never met before. In addition, registrars described that it was common to discharge up to ten patients a day, in addition to taking rounds. This workload made them unable to take the opportunity to learn from role models by joining consultants as they were giving information about treatment or prognosis to patients and next-of-kin.We had a patient who died in a lot of pain and we felt that we had failed in some ways, or that we were unable to help the way we wanted to, even if we spent a lot of time with the consultants in the palliative team. Then the nurses conducted a debrief and we were invited to sit in to talk about it. We don’t have time to do so in the consultant group, I think was the idea then… (Registrar)
The difficult duty of confidentiality
Cultural challenge
Next-of-kin as an equal partner and a practical resource
That has something to do with safety. That you dare to stand in to do difficult and tough tasks. To answer questions and tasks that comes from next-of-kin. We have had next-of-kin who have sat by the bed for several days. When we ask them why, they respond that it is because they don’t dare to leave the patient. They have seen the pace we have. (Cancer nurse)
Healthcare professionals described the balance between involving and using next-of-kin as a practical resource as a ‘grey zone’. Nurses asked next-of-kin to perform some tasks because they wanted to involve them, but mostly because the nurses did not have the time or staffing. The results indicate that healthcare professionals depend on next-of-kin in care provision due to understaffing and peak problems.We can probably not say that we give them (next-of-kin) medical tasks in a way, but they help with safety, care, showers and other such things. Not so much the medical care really, but they might help with giving medications. Pills. (Cancer nurse)
Educational challenge
Limited systematic next-of-kin education
You feel that you are stagnating a bit. You have to stay so long on the little less challenging operating level. You dream of more treatment responsibilities and having your own patients. (Registrar)
The emotional challenge
Unspoken expectations of next-of-kin performance and emotional stress
In the interviews, there are several examples of next-of-kin sitting at bedside for days due to concerns with medication or staffing. This was difficult for healthcare professionals to resolve. When nurses and consultants receive critical feedback they often took it personally, even if the criticism was directed at the system.It is not said out loud, but basically you have expectations once they (next-of-kin) are there. (…) That they try to be active in their role, and not just sit passively by the patient and expect something of us. (Cancer nurse)
Physical and technological challenge
Location and infrastructure affect possibilities for next-of-kin involvement
The results also showed that the documentary system did not include designated areas for documentation of information or correspondence with next-of-kin. Healthcare professionals often spent a lot of time figuring out what information next-of-kin had received, their resources, the patient’s network, and how next-of-kin were involved in the cancer care process.It is too little space. It can affect patient safety. (…). It is too many patients and next-of-kin in one room. There is not enough equipment. You need to use a lot of time to look for equipment and to find a place. We have to take what we find, because there is not enough room for everybody. (Manager)