1. Differences between older and younger patients
Two professional groups mentioned that differences between patients are the result of individual variance, rather than age differences.
"Apart from age influences, there is just a lot of variance [between patients ERP]." (Nurse3)
"65 or 85 years old: the actual age doesn't matter." (Res4)
These individual differences were also found in the face to face interviews, as some patients prefer very detailed information, while others prefer little information.
"I want to know everything." (Pat.int3)
"All the information and explanations don't cure. At least, that's my opinion, but every human being is different. I personally don't need it." (Pat.int1)
"I actually don't want to know what the future will bring." (Pat.int5)
Despite individual differences, the participants in the patient groups and in one professional group (of experts) agreed that older patients in general have difficulties with processing and remembering information.
"Short term memory in older individuals is an important factor [in providing patient education ERP]." (Rel.foc1)
"Yes, you have to read information more often." (Pat.foc2)
"That's obvious, there is a difference in the way the brain functions; cognitive differences." (Expert1)
Life experience and expectations
Both patient and professional groups considered life experience the most important difference between older and younger patients. Older individuals often have other diseases to cope with, so they are more used to being ill. They are more reconciled with the idea of becoming ill than younger persons are.
"And often they already have functional problems, lung diseases for example, so they are more used to being sick." (Nurse1)
"Emotions are different for older people [..]. Young persons shouldn't get ill in any case. When you grow older, you are aware that your chances to get cancer increase." (Pat.foc5)
Consequently, according to both patient groups, interviewees and professional groups, older persons view their future differently from younger persons and are better able to cope with illness than younger ones.
"I think that when you grow older, you're able to handle situations better. When you are 30 years old, you'll have a whole future in front of you. But when you are over 70 years old, the largest part of your life lies behind you. Also, when you are being treated for cancer, the chance that you will die of disease other than cancer grows." (Pat.foc7)
"Well, I'm 75 years old and I don't know how many years there are left." (Pat.int3)
Accepting help from others
Older patients may suffer from co morbidity, which can complicate treatment and influence their view of the disease. However, although more vulnerable, older patients may not ask for help when necessary and often need guidance in asking for and receiving help, according to both patient and professional groups.
"Nurses should realize that [older ERP] patients might need more attention." (Pat.foc5)
"For older individuals, it's difficult to ask for help. That is something I hear very often. [..] Older people frequently say: 'But the children, they are busy working, they don't have the time to help'. So to ask a neighbor for help, they have to overcome their resistance. [..] And you should stimulate them, involve them, for example: 'Your daughter actually appreciates it when you ask for help; they often can do so little to help'. The family is often powerless to do anything, because mum or dad keeps the door closed." (Nurse3)
2. Needs of older cancer patients
Both patient groups, interviewees and professional groups stated that patients in the first place want to receive concrete information about their disease and treatment, like diagnosis, prognosis, side effects of the treatment, complications, and practical information.
"I think the most important goal is to provide information about expected side effects of the treatment." (Expert8)
"The nurse should explain something about possible infections you can get after the chemotherapy treatment." (Pat.foc9)
"The medical [explanation ERP] was most important, off course." (Pat.int1)
Exploring patients' needs and tailoring information
The goal of patient education should further depend on individual preferences. Thus, directly asking patients about their (information) needs and tailoring the information to these specific needs is considered very important. In both patient and professional groups it was rendered important to ask patients what type information they want to receive.
"It's important to tailor patient education to the patients' personal information needs. That's a basic skill nurses should have." (Pat.foc5)
"Ask them! Just ask them what they need." (Rel.foc1)
According to a patient group and interviewees, nurses pay insufficient attention to the individual patients' information needs.
"My experience is that during patient education, no distinction was made between different patients. For example, we didn't feel like talking about getting in contact with other patients, but the nurse kept talking about this. The conversation was led by the preset ideas the nurse had in mind and she didn't ask us: 'Is it all clear?' or 'What kind of information would you like?'. It was like she had to stick to her mission." (Rel.foc1)
"It was a standard story, at least, that was how I experienced it." (Pat.int5)
"I thought what she did, was merely reading aloud the information. What she 'had to do', like 'I just have to tell you this'. (Pat.int4)
In addition, the interviewees stressed the importance of the nurse exploring the personal situation of the patient and tailoring information by giving personal (lifestyle) advices.
"They did not ask: 'How's your living condition? Can you amuse yourself?' [..] I think that should be part of it. [..] And maybe they could give advises, like 'you could do this, or that'. You don't hear any of this." (Pat.int4)
"Nothing was asked about my personal situation." (Pat.int5)
Besides the content of information, also the moment of providing information depends on individual preferences, as mentioned by the patient groups and interviewees.
"Well, that depends strongly on the patients' preference. Some people say they are really upset when they have just heard the diagnosis, the information just don't get in." (Pat.foc7)
"And then this man, the doctor, said: 'Sir [..], you have cancer'. All I could say was: 'O, o, o.....'. The next thirty minutes I was completely stunned. But then the doctor was going to explain the treatment options. These conversations shouldn't follow directly after one another." (Pat.foc8).
"When she told me the diagnose, the nurse said 'you can go home now and come back [..], we can discuss the treatment options then.' I said: 'Actually I wanted to do this yesterday, in other words: it's already too late. I prefer doing it this afternoon'." (Pat.foc6)
Empathy and support
The patient groups and the interviewees stressed the importance of not only tailoring the information to the patients' information needs, but also showing empathy and support in order to fulfil the patients' emotional and support needs.
"As a nurse, you need to show empathy to make patients feel comfortable. [..] And psychosocial subjects; I think it's strange these are not discussed." (Pat.foc5)
"Every patient is different, the challenge is to give support in the right manner" (Rel.foc3)
"The way in which she offered it was very reassuring. [..] She was all ears and [..] it was just very human." (Pat.int1)
Dispel the patients' fears
Patients mentioned that they experience(d) worries about their health, their treatment and their future. The nurse need to pay attention to their worries and fears in order to dispel them.
"They [nurses ERP] need to check what a patient is worried about. They [patients ERP] bring up concerns and worries they want to talk about to return home satisfied." (Pat.foc7)
"They try to reassure you, but that's not easy. [..] I was more relieved [after the consultation ERP]. I knew a little bit more about how it would go." (Pat.int5)
Supporting the patient and his relative is not only important during patient education at the beginning of treatment, but for older patients it is essential to provide continuous support at several moments during the period(s) of treatment. This is experienced as a gap in current practice.
"Yes, but not just at one single moment. For example, after a few weeks you should create a moment to talk about: 'How are you doing, how did you experience this treatment period, are you able to handle everything..' I consider this important." (Rel.foc4)
"A little chat helps much more than a pill. [..] If I could talk with her, that is much more important than the medical care she has to give. [..] For example: 'How do you feel?' or 'What do you think about this or that?'. That was never asked." (Pat.int3)
Patients' expectations and treatment goals
Another aspect in patient education is, according to the professional groups, exploring patients' expectations or ideas about treatment with chemotherapy.
"You can try to tailor to the patients' needs by asking: What do you already know? What did the doctor already tell you? What would you like to know more? What are you worried about?" (Res4)
According to the professional groups, the difference in life expectations between older and younger patients can have its impact on the decision of undergoing a treatment, such as chemotherapy, as older patients may feel they will not benefit as much from the treatment as younger patients. Therefore, the professional groups stated that the possibility should be created to reflect on the question: do I want to undergo a treatment or not?
"Maybe they [patients ERP] wanted to be asked that question again. This could be asked by the doctor at a later moment, fine, but the possibility should be there to ask this question." (Expert2)
"The alternative (not undergoing a treatment) is often not even discussed." (Expert3)
"Because older people often think they have no choice." (Res6)
According to the professionals and patients groups, an important aspect in the decision of undergoing the treatment is exploring the goals patients (and their relatives) have.
"My daughter was pregnant, and when my husband was diagnosed with lung cancer, we immediately said: 'you are going to stay alive', because we wanted to see my grandchild become 20 years old. We absolutely wanted to live for many more years." (Rel.foc4)
"I think it is important to hear what they want to achieve, because that is the drive to undergo the treatment. Some patients explicitly say: 'My daughter is three months pregnant so I want to live at least half a year more." (Nurse3)
Addressing patients' relatives
The patient groups especially stressed the importance of nurses supporting the relatives as much as the patient itself.
"It's important that there's support for my wife, she's more ill than I am." (Pat.foc3)
"I would like to have the feeling I can contribute in my own way. At a given moment, a nurse explained to me how I could take care of my husband. That was fantastic." (Rel.foc1)
Communication training for nurses
According to a patient group and interviewees, nurses' skills to tailor information to the patients' specific needs have to be improved.Training the nurses in conversation techniques and specific knowledge about older individuals was considered useful by both patient and professional focus groups. The patient groups additionally pointed out the importance of training the nurse in showing empathy and providing emotional support.
"An important aspect is that nurses receive good training, including knowledge of the difficulties that may exist in older individuals with processing of information." (Expert7)
"Part of the training should be gaining knowledge about older people, but there are more things that should be taught, for example conversation techniques." (Nurse5)
"But that [showing empathy ERP] is not something everybody has, they should be trained to show empathy, so they can focus on patients' needs." (Rel.foc1)
According to the professional group, for a training to be effective it should be completed by a follow-up, in which learning in practice is the key ingredient.
"I think communication training can only result in changed behaviour if you connect it to a follow-up in which learning and working is indeed connected so that working situations become learning situations [..]." (Expert5)
3. Enhancing recall of information
Bringing a relative
Both patient and professional focus groups mentioned that the patient self can enhance the remembering information by bringing a relative to the consultation, because patient and relative both will remember different aspects of the information.
"Bringing someone helps with listening." (Pat.foc5)
"I thought it was pleasant that I brought my children with me. In this way they knew what was going on" (Pat.int3)
"I think children often ask very relevant questions during the consultation, something the father or mother did not think about. Patients often tell more when somebody they know is present. As a nurse, you receive more complete information, like: 'Well mum, you did not yet tell, that...' (Nurse5)
Check: does patient understand the information?
For the nurse, there are several ways in which to enhance recall of information by older cancer patients. In the first place, it is important that the nurse checks to see if the patient understands the information, according to the patient groups and to one group of professionals (researchers).
"Nurses should ask the patient if there are any questions or if certain things are not clear, both during and after the consultation." (Pat.foc5)
"You should systematically create several moments in which to make sure that everything is clear for the patient." (Res4)
Prioritize and offer information in a structured manner
According to the patient and professional groups, nurses have to set priorities about what to address during patient education. Also, they should offer the information in a structured manner and summarize the most important information.
"Prioritize, summarize and repeat it the next time." (Nurse2)
"The whole structure of the conversation: cluster the information and offer the information step-by-step." (Expert5)
The patient and professional groups mentioned that it is helpful for older patients to receive information step-by-step, i.e. over different periods of time.
"I would spread the information and check if they remember it. Not too much information at a time." (Res2)
"There should be a possibility for older people to come back another time. Older persons handle emotions in a different manner and they process information more slowly." (Pat.foc5)
Speak in clear language
In the patient group, speaking in plain language in stead of using technical jargon was mentioned.
"During patient education, they often use technical jargon. They can explain a lot, but in the beginning you're just stunned and nothing gets in. [..] They should explain everything in comprehensible language." (Rel.foc3)
Combine different methods of offering information
The professional group, and one interviewee pointed out that it helps to combine different methods of offering information, for example written (e.g. booklets), oral, and visual. The patient group did not mention this aspect.
"To combine visual information with oral information, if necessary with handouts so family members can write down information." (Nurse3)
"It's to much to comprehend everything that's why it is useful to receive a booklet. At home you read it over." (Pat.int5)
"But this [combining different methods of information ERP] all involves general information. Even more effective is offering personally relevant information, for example what is discussed during the consultation and what is particularly relevant for this specific patient." (Expert3)
Use question list
Finally, both patient and professional groups mentioned the use of a list with questions or subjects to discuss during patient education about the treatment.
"The oncology nurse sent me a list with subjects two days before the consultation. This way, I was able to prepare myself. I thought it was pleasant to know what she was going to discuss." (Pat.foc7)
"I think that page in the information folder [e.g. Treatment Guide Chemotherapy ERP] is useful to write down questions to ask the nurse." (Pat.foc3)
"Questions the patient can prepare before the consultation. I think this would yield a profit." (Expert6)