Background
Methods
Recruitment and sample
Sex | |
Male | 1 |
Female | 44 |
Mean age (range) (N = 36) | 45.3 (25-62) |
Care setting | |
Hospital | 19 |
Home care | 11 |
Hospice | 9 |
Other (e.g. transmural) | 6 |
Mean work experience as nurse in years (range) (N = 35) | 22.4 (3-41) |
Highest degree in nursing | |
Master’s degree in Advanced Nursing Practice | 15 |
Higher professional education (Bachelor’s degree) | 23 |
Secondary vocational education | 7 |
Additional education course | |
Oncology and/or palliative care | 23 |
No additional course in oncology or palliative care | 12 |
Unknown | 10 |
Data collection
Physical symptoms such as fatigue, pain and loss of appetite are common in advanced cancer cases. These symptoms can have consequences for people with cancer and their informal caregivers. |
• Do you recognize this description?/Is this description familiar? |
• What do you do at present to support these patients and/or informal caregivers in dealing with these physical symptoms (=aspects of self-management support)? And how would you want to do this in the ideal situation? |
• What are your thoughts on the use of eHealth in this context? |
Advanced cancer can be associated with somber moods, anxiety and uncertainty. Both the person with cancer and their informal caregivers may have these feelings. |
• Do you recognize this description?/Is this description familiar? |
• What do you presently do to help these patients and/or informal caregivers deal with these feelings (=aspects of self-management support)? And how would you want to do this in the ideal situation? |
• What advice do you give patients and/or informal caregivers for situations where they would like to talk to a healthcare professional or caregiver but where this is not possible or only to a limited extent? |
• What are your thoughts on the use of eHealth in this context? |
Data analyses
Results
Number of posts
Self-management support by nurses
5 A’s | Current situation | Ideal situation | ||
---|---|---|---|---|
Self-management support for patients
|
Self-management support for informal caregivers
|
Self-management support for patients
|
Self-management support for informal caregivers
| |
Assess | Obtaining an understanding of the patient’s background, personal situation, wishes, and needs by initiating a discussion, enabling an open discussion about topics, actively asking follow-up questions, listening | -a
| More time | In general: More attention |
Advise | Giving information and guidance, advising, listening, and referring the person to other disciplines or organizations | Giving information and guidance, advising, listening | -a
| |
Agree | Jointly setting goals, letting patients prioritize symptoms themselves | -a
| -a
| |
Assist | Mapping barriers and strategies applied in the past, giving practical tips | -a
| -a
| |
Arrange | Continuity of care | -a
| In general: Better cooperation between intramural and extramural healthcare | |
Throughout all 5 A’s | More attention to self-management support in the home situation |
Assess
Nurses said that the patient’s insight into their own situation and functioning puts the patient more in control of what is happening. This lets the patient take charge and/or stay in charge, which helps in tackling the issues at stake. Nurses also mentioned that if the patient and the informal caregiver have a good picture of the situation, this creates mutual understanding between them. Mutual understanding can improve the communication between the patient and the informal caregiver; any misunderstandings and confusion can be straightened out. This also often improves communication between the patient, the informal caregiver, and the nursing professional.“When we ask for information, patients find that they reflect on things more.” (nurse specialist)
Some nursing professionals said that they use screening tools when assessing the patient’s symptoms, for example the Utrecht Symptom Diary which is a Dutch translation of the Edmonton Symptom Assessment System [35], and the Lastmeter, the Dutch version of the Distress Thermometer [36].“What I do now is first ask what the problem is, how important is it for the patient, get to know the patient well so that I can give advice that suits their situation.” (nurse specialist)
The screening results can present angles from which to start discussing issues. However, others also emphasized that running through the screening tools should never be an end in itself, that nurses must not blindly trust the figures.“What we do, is we let the patient fill out a Utrecht Symptom Diary, so the patient gets insight in the symptoms he suffers from.” (hospital nurse)“In practice, the Distress Thermometer is being used which also gives insight in not immediately discussed feelings.” (nurse specialist, in the context of support with dealing with psychological problems)
The discussion techniques that nurses use to obtain a picture of the patient’s background depend on the nature of the issues—physical, psychological, or spiritual/existential. In the case of physical problems, nurses said that actively asking follow-up questions is often the best way to determine the nature and cause of physical symptoms. This is in part because some of these symptoms may be due to psychological or social problems, such as increasing pain caused by too many family visits.“I am also somewhat anxious about translating complaints or symptoms into scores or numbers. It could be used as a starting point […] but not more than this.” (nurse specialist)
According to the nurses, whether the symptoms listed above are eventually discussed in detail depends on the patient’s needs.“Getting a conversation going (if people allow that) can make people feel relieved and sometimes they learn how to understand each other’s emotions better.” (transmural nurse)
Furthermore, nurses in hospices in particular said that in the ideal situation more attention would be given to assessing the informal caregivers’ situation:“The ideal situation would be that I would be able to find out what skills the patient has that are necessary for self-management and work with the patient and/or informal caregiver to determine interventions that tie in with that.” (nurse specialist)
“In the ideal situation, we hospice staff would be better informed about the informal caregivers’ hobbies, social activities and how they deal with social contacts [...] The combination of this [ed. combination of care for a patient and continuing with their ‘own’ social activities] and ensuring contact with their sick relative in the hospice is so important for the informal caregivers in particular.” (hospice nurse)
Advise
Nurses said that they provide information repeatedly in different forms (verbally, on paper, and digitally). This gives patients the opportunity to read the information several times, which helps them retain the information. Despite this, nurses felt that providing information deserves more attention. This applies in particular to providing clear, unambiguous information, and clear communication about the prognosis.“The loss of appetite often causes a lot of frustration with one another and distress. I try [...] to explain how the loss of appetite is part of the disease process. I find that this takes some of the pressure off and that the client and their informal caregivers start to understand each other better again.” (transmural nurse)
In the case of psychological symptoms, nurses often deliberately refrain from giving advice and offering solutions. They said that somber moods, anxiety, uncertainty, distress, and worry are feelings that cannot be alleviated and that each individual patient deals with this in their own way. Nurses concentrate mainly on listening, acknowledging these feelings, and being there for the patient. According to nurses, these are the best approaches for supporting patients with symptoms of this nature.“We explain about dividing energy and taking into account the, to the patient, important moments, e.g. visitors, hobbies, etc. In practice, it appears that the patient mentions having hobbies, but that hobbies get put on hold because of low energy. A daily schedule can help to save enough energy for this.” (hospice nurse)
Some do give a few tips to the patient, such as talking about the symptoms and looking for diversion.“[...] leaving room for everything they are feeling, thinking and experiencing, not giving each other advice and not coming up with solutions. Anything is allowed.” (transmural nurse)
“Informal caregivers’ feelings of powerlessness are often an issue here. They already have to hand over a lot of things when their relative is admitted to a hospice. [...] We often then look for alternative responsibilities for the relatives [...]. For instance, you can explain how to give good oral care. Complementary care, such as giving a hand massage, can also be handed over to relatives to some extent.” (hospice nurse)“We support informal caregivers by listening and giving tips and advices. For example […] by taking the pressure off nutrition. My experience is that informal caregivers feel like they are not giving proper care, if the ill one eats insufficiently. We also offer voluntary palliative care so informal caregivers could unwind a little.” (home care nurse)
Agree
For example, when decisions have to be taken, nurses support the patient by helping them to draw up a list of advantages and disadvantages and weigh these up against one another, and to write down any questions for the next appointment with the treating physician, family doctor or nurse.“When getting insight in the patient’s problems, it is also important to know what is important to the patient himself, to work on. What does the patient experience as the biggest issues.” (nurse specialist)
“Patients sometimes ask then what they should do. I can’t give them that advice but I can help them to get an overview of everything. It helps enormously if they write this down on paper and e.g. assign a degree of importance.” (hospice nurse)
Assist
Nurses stated that every patient is unique and deals with their feelings, symptoms and problems in their own way; that is one reason why it is important to put the patient in control when dealing with symptoms. Patients often know best themselves where their strengths lie. If that is not the case, the patient will need assistance, to be made more aware of their own strengths by becoming actively involved in their own care.“[...] how did you respond to difficult situations in the past and what helped you then to get back on track?” (home care nurse)
Arrange
“Home visits should also be much more effective. This currently depends on the hospital and partnerships with home care organizations. The hospital can also inform the primary care side and make sure the family doctor is aware of the bad news at an earlier stage and that the oncological or palliative care nurse makes contact. So that needs better cooperation between the primary care and the hospital.” (home care nurse)
Throughout all 5 A’s
“I think one point for improvement would be instructing people in the hospital where they can find information/support themselves to make it easier for them to tackle this when they get home. There should be more continuity here; at the moment the hospital and the home are two separate worlds. [...] More continuity too in information and so on; there are loads of different information sources at the moment and patients can no longer see the wood for the trees.” (hospital nurse)
Experiences with and opinions on the use of eHealth in self-management support
Hospital nurses in particular said that eHealth could promote and safeguard the continuity of care if there is a link between the eHealth application and the physician, family doctor, and/or nurses. Moreover this would ensure the accuracy and clarity of the information.“Use of a symptoms diary can certainly be worthwhile and could be part of an eHealth program. Using this can also give a patient a better understanding of their symptoms, and they may be able to make their own connections between activities and symptoms.” (hospital nurse)“[...] precisely for those who want to remain self-reliant for as long as possible. A digital patient record with the patient as the owner could be particularly beneficial in letting the patient be in control.” (hospice nurse)
Home care nurses said that eHealth is less suitable for the current generation of older patients because they do not know how to use computers and cell phones.“However, I frequently see patients bringing their tablets, setting up a laptop but subsequently hardly having time/energy for it. Relatives possibly might benefit from it more.” (hospice nurse)
Furthermore, some nurses said that eHealth is more suitable for support in dealing with physical problems than psychological problems. According to nurses, eHealth cannot remove or resolve feelings of somberness, anxiety and uncertainty, although putting tips online on how to deal with this could be worthwhile.“I frequently deal with (frail) elderly people (+75 years), 99% don’t have knowledge of controlling a PC, app or tablet. This would probably be different in the next generation of older people.” (home care nurse)
“Of course a program with tips and tricks and elements to cheer people up would be OK. I don’t think anything fundamental can be done about somber moods, anxiety and uncertainty.” (hospital nurse)