The analysis resulted in the identification of two themes: “capturing patients’ burden of CRC treatment and “HPs’ support to ameliorate the burden”. The first theme is based on three sub-themes and the second on four sub-themes (see Table 2). In the following text, the contents of the themes and sub-themes are described in detail with quotations from the participants.
Capturing patients’ burden of colorectal cancer treatment
This theme emerged from the HPs’ description of patients’ burden of CRC treatment and how they tried to capture these burdens. The theme was characterised by the following three sub-themes: (1) emotional responses burdening patients, (2) being troubled by treatment complications and side effects, and (3) the patient’s unmet need for information increasing the burden.
Emotional responses burdening patients
The majority of the participants described dealing with patients with a range of emotional responses. Sometimes, patients came in with a stomach-ache and constipation in need of emergency surgery, leaving less time for the HPs to inform the patient. Those patients often responded with mental shock and crisis when realising it was cancer and appeared to the HPs as being in loss of control over their life. Some of the participants perceived that patients did not have time to prepare mentally for the surgical procedure, and even though they were reassured of a successful surgical outcome, patients did appear to feel unsafe.
“They get very upset and devastated. It is a life crisis in a way…it is heart-breaking to watch their reactions and difficult to know how to help them in the best way possible. You really can’t tell them that everything will be fine because sometimes it isn’t” (Nurse, interview 1).
The participants said that some patients were overwhelmed by everything that was going on during the admission and showed clear signs of discomfort, which resulted in inactivity and a lack of motivation for recovery. In some cases, patients expressed the desire to stay in the hospital as long as possible. In the respondents’ opinion, patients’ responses to the short treatment time and to early discharge from the hospital depended on HPs’ efforts to safeguard patients’ need for information and support.
“It is the whole situation…they have had bowel surgery, and they might think that going home represents a huge challenge…and that we sort of ‘kick them out’. As long as we explain that this is normal… you can do it, just take it easy. Going home to your own bed and eating your own food are often the best things for a healthy appetite and a good night’s sleep” (Nurse, interview 7).
Many participants indicated that enrolment in an efficient cancer care pathway gave patients little time to absorb and react to the fact that they had a serious illness needing treatment. In addition, a short hospital stay meant leaving the hospital without all the answers needed.
“Everything has to happen so fast. As a patient, you are diagnosed and treated within two weeks time following your first suspicion that something is wrong. It’s a good thing but also a challenge…I don’t know…I think patients feel they are in a vacuum. In addition, the patients have to wait for further tests and treatment…can it be treated or not? There are a lot of aspects here…I really don’t know what’s the worst!” (Surgeon, interview 9).
In some cases, patients took on their next-of-kin’s worries and made them their own, which added to the emotional burden. This became particularly obvious if the patients were parents of small children, as patients feared how the children would be affected by having a seriously ill parent.
“’What will happen if I have metastatic cancer?’ the patient asks. The younger patients with small children…if there are children involved, the challenges are immense” (Nurse, interview 6).
According to the participants, the waiting time between surgery and the first post-surgery appointment at the outpatient clinic constituted an emotional burden for patients. At the appointment, patients are informed by the physician of any detected metastasis or need for further treatment.
“Of course, it’s nerve-wracking because you will never know one hundred percent before the first appointment several weeks after surgery when they have the biopsy results ready if you need more treatment. Our patients are positive…hope they are cured and leave for home in good spirits…but of course with a touch of excitement. There will always be something unanswered” (Nurse, interview 2).
The participants indicated that being enrolled in a 5-year follow-up programme was an asset and a necessity, but they also viewed it as a treatment burden. On one hand, they emphasised that it could be a relief for patients to be monitored as patients knew that health care services were in control of a potential cancer relapse. On the other hand, they expressed it as a long-lasting burden to the patient, not knowing for years if they were really cancer free.
Being troubled by treatment complications and side effects
Many participants expressed that patients were burdened by surgical complications, primarily wound ruptures, intestinal leakage, surgical wound infections and ventricle retention. They described these complications as severely challenging for patients and noted in some cases, it prolongs the hospital stay and recovery.
“Then, they get retention, or they get anastomosis leakage, or they get facie rupture. Then, it will be a longer course…then, I see the crisis approaching! This is the biggest challenge” (Nurse, interview 5).
In the participants’ views, treatment side effects involving post-surgical pain, nausea and vomiting due to reduced bowel movement represented a burden to patients. They reported that many patients were striving to regain normal bowel function and a healthy appetite. In some cases, complications and side effects led to immobilisation among patients who had a hard time getting back on their feet and being active. The participants expressed this as a challenge in for recovery and the avoidance of further complications.
The majority of the HP spoke of having an ostomy as a major treatment burden. They expressed the physical, emotional, and relational burden that patients had to endure and noted that the fear of having an ostomy often exceeded patients’ fear of the surgery itself.
“The last thing in the world!…they would do anything to avoid it (the ostomy). Most of them think it’s horrible, and many can’t even bear to look at their stomach. It is a big challenge for them” (Surgeon, interview 3).
Many participants were concerned with how an ostomy often represented a huge strain for patients, as it affected body functioning and patients’ self-image and represented a threat to their sexual health. They stated that some patients viewed the ostomy as a stigma and were shameful of it. Some of the participants expressed concerns that information on sexual health following colorectal surgery was rarely communicated to patients. Although poor sexual function was highlighted by the participants as a well-known side effect from rectal amputation, they called for a greater focus on sexual health as part of post-surgical information and a need for increased knowledge and competency among staff.
“Getting an ostomy is a huge intervention disturbing the self-image. It is important to be open about it, especially when it comes to sex” (Nurse, interview 8).
Patients’ unmet needs for information increasing the burden
Several participants talked about how patients often expressed a need for exhaustive information. The fast-track treatment procedures not only left patients little time to recover at their own speed but also made it challenging for participants to provide patients with information and support. In their view, patients’ unmet information needs led to an ongoing information hunt that involved different HPs, who might give ambiguous answers.
“They are very curious about things. They not only ask the doctor who does the rounds, but they ask the auxiliary nurses, the evening shift nurses who do not know the patient from the day shift. Then, you lose information, and there will be misunderstandings. It is very challenging and frustrating for the patient” (Surgeon, interview 3).
Patients’ need for information, as experienced by the participants, was mostly related to the surgical procedures, but they also expressed a need for answers to questions such as “What will happen next? What will happen to me?” They were eager to get back to a normal life and continue with their lives, and they sought information about physical activity, diet, sexual function and daily life activities.
“In a few days’ time, you are treated and you have the surgery. It happens quickly. There are many who have not fully realised that something was wrong in the first place. A lot of them respond by seeking all the information they can find and are caught up in it” (Nurse, interview 4).
It was clear to the respondents that uncertainty regarding discharge and self-management constituted a burden for patients. Although the discharge routines involved extensive verbal and written information, the participants feared that some patients were left to themselves with many unanswered questions, unmet information needs and nobody to turn to.
“Many patients feel that everything stands still when they are here, so then, it starts when they come home…the crisis may hit. Then, there are no doctors’ rounds. Perhaps the ostomy was not as productive as the day before. They do not quite have the safety net of professionals like they had here” (Nurse, interview 5).
Health professionals’ supportive work to ameliorate the burden
The second theme describes the participants’ experiences of their supportive work to ameliorate the burden. This theme contains four sub-themes: (1) creating safe environments, (2) motivating and supporting patient self-management, (3) facilitating contact with family and peer support and (4) facing difficulties in providing sufficient support.
Creating safe environments
The participants were concerned with making patients and their families feel safe by reassuring them that they were safe and receiving the best treatment. This meant being there for patients and providing information and support. The HPs viewed trust as the essence of a safe environment. A safe environment involved the coordinator of the cancer care pathway, who closely followed up with patients regarding appointments and tests, and the HPs, who provided thorough information on surgical procedures, offered emotional support, and reassured patients that they would cope at home.
“You have to make it clear to them that life goes on right after the surgery; time does not stand still while they are here. A lot of them feel that way, thinking life goes on when I come home. It is as if they are using a stand-by button. Then, you have the opposite ones…those who are being careless. Then, I need to hold them back a little. It is important to know who you are dealing with…talk to the family and get to know the patient” (Nurse, interview 5).
Motivating and supporting patient self-management
The main goal of the HPs’ support, as expressed by all participants, was to facilitate early post-surgical mobilisation. The participants explained that colorectal surgery is prone to complications, and early mobilisation of the patient was stressed as crucial to avoid complications and a prolonged hospital stay. Some participants explained how they needed to balance the intensity of the motivational initiative and were aware that patients might feel a pressure to perform. They were concerned with making patients responsible for their own recovery and helping them to regain control and restore normality. They expected that patients would respond to their support by adhering to advice on activity, diet and medications.
“We expect them to be up and about, start to eat and drink a little, stressing the need to get out of bed to avoid complications but also to make them get back on their feet and recover from the surgery. Therefore, we expect them to listen to what we suggest, and usually, they do fine. In a way, they are prepared for it because we tell them prior to surgery that there are a lot less complications if they quickly get back on their feet” (Nurse, interview 1).
Most of the participants also said that they motivated patients to self-manage and to cope with their new life situation by increasing their self-management and coping skills. In particular, patients who received an ostomy needed support in becoming motivated to adjust to changed bodily functions and a new body image. HP support entailed a careful approach to teaching patients how to take care of the ostomy (care that involved an ostomy care nurse) as well as ordering ostomy equipment for the patient to use after discharge.
“Our wish is that they learn as much as possible. We try to give them tools for coping so they feel ready to go home (…) I think that sometimes we impose particular skills on them, you need to learn this and that…you must have changed your ostomy bag a certain amount of times before you go home. I think I manage quite well to accept the times when they (the patients) don’t want to be responsible. It’s their way of coping” (Nurse, interview 5).
Another incentive to motivate patients’ self-management expressed by the participants was a patient diary that patients received at admission on the ward. The HPs encouraged patients to record how they were doing post-surgery, including their daily self-management activities, such as hours spent out of bed, dietary activities, bowel movements and pain levels.
“There is a big difference between those who use the tools we give them and those who don’t. We have a diary for them to fill out. I don’t know, but those who actively use it, they take responsibility for their own treatment in a way, and they get much more out of it and get out of hospital faster” (Nurse, interview 4).
Facilitating contact with family and peer support
The participants emphasised the importance of not ignoring patients’ relatives but inviting them in as patient supporters. It was important to the participants to create a ward environment that included the patient’s family. Efforts to involve the family depended on family relations, whether and how often family members would visit the patient on the ward, and whether the patient consented to the hospital making contact with the family. Some family members initiated their participation in treatment meetings, which the participants viewed as important given the high information intake.
Many times, the next-of-kin will take part in treatment meetings. Then, two sets of ears listen to what the plan is…if one of them picks up on 10% of the information and the other one 10%, they have 20% altogether!” (Nurse, interview 2).
In addition, some participants expressed that illness severity sometimes determined how they approached the families, and they explained how supporting the patient also meant supporting the family.
“Someone needs to be in control, you know. Many of them receive continuous information when they visit, and some ask for a meeting with the nurse and the doctor. It has a lot to do with the severity of the illness. It is, of course, the patient who is ill, but cancer affects the whole family. You can’t forget about the next-of-kin because they are such great supporters. If the next-of-kin are doing well, the patient is doing even better” (Surgeon, interview 3).
Some participants did not perceive family members as supportive. Although they valued the families as important supporters of patients’ recovery and encouraged them to take part in the support, they also described situations in which family members had the opposite effect on the patient’s motivation. The participants described how husbands or wives were reluctant to take the patient home, or they took over the patient’s self-management tasks. Moreover, for some patients, worried next-of-kin might even prolong the hospital stay. The participants described family members as uncertain and anxious at the thought of taking responsibility for the patient’s recovery. Although the participants expressed their understanding of next-of-kin’s actions as a crisis reaction, they sometimes perceived the actions as non-supportive and disruptive for the patient’s self-esteem and courage.
“The patients who have a lot of family around get affected by them. As soon as they get rid of their own worries, they take on their family’s worries. For instance, the patient may have recovered fine, he is up and about, eating and the bowels are working again. Then, the family comes to visit, and the patient suddenly appears much worse and can’t go home. The hospital stay will then be prolonged because of the family’s worries…even if the patient would have managed fine at home. I don’t think most people realise how healing it can be to come home to familiar surroundings!” (Nurse, interview 7).
All participants talked about how peer support contributed to ostomy patients’ self-care. Peers from a patient organisation visited the ward regularly, and the HPs explained how they made conscious use of the peer support by informing patients of their peers’ presence on the ward and facilitating contact between them. The peers would offer patients advice on ostomy equipment and care based on their own experience from living with an ostomy. Two of the participants noted that not all patients were ready to meet with a peer and talk about the ostomy.
“They (the patient organisation) come here a lot. Actually, not everyone wants to meet with them though…they (the patients) are in a post-surgical stage, and there are so many new things with the ostomy they have to take in…it all happens so fast. They get a card and can contact them if they want to. They will always be there for them” (Nurse, interview 8).
Facing challenges in providing sufficient support
The participants described how they faced challenges in their effort to support and motivate patients. They described a difference in their supportive work with patients who had a scheduled admission and those who were emergency admissions. With scheduled admissions, the HPs had more time to inform and prepare the patient before surgery. In contrast, one of the respondents explained how emergency admissions challenged the HPs’ routines for preparing the patient.
“Everything goes fast from the moment they get the CT result until they lay on the table in the operating theatre. Therefore, you do the most important things, and there is not enough time to go through everything. Then, again, you go through everything, but they are in shock and will not remember what you said anyhow. I don’t know what the biggest challenge is; that we don’t get to give them all of the information or the fact that they feel that there is too much information” (Nurse, interview 2).
Being the messenger of bad news was a particular challenge experienced by some of the respondents. Information on diagnosis or prognosis, which became a burden to the patient, or information on an unexpected treatment complication was perceived as difficult to convey. Two of the respondents described this responsibility as finding a balance between being honest and being gentle when approaching the patient because they did not want to scare patients but still wanted to be realistic. When receiving the information, some patients reacted with anger and sadness, while others became apathetic, which the participants sometimes found hard to handle.
Some participants were also challenged in their informational work by not being able to provide patients with the information they required because they were waiting for the final test results, which might determine the future treatment course and prognosis. In most cases, patients had to leave the hospital without this crucial knowledge.
“It is really difficult to plan for the follow-up while the patient is still in the hospital. The patients are very eager to know about this. What will happen next? Do I need more treatment? Do I need chemotherapy? We don’t know that until the test result is back from histology. So, they are sent home without a final plan for follow-up, and to some, this is difficult to understand” (Surgeon, interview 9).