Introduction
Methods
Sample and procedure
Interviews
Data analysis and reporting
Results
Participants
US sample (N = 12) | Dutch sample (N = 15) | |
---|---|---|
Age | ||
30–40 | 2 (16.7%) | 1 (6.7%) |
40–50 | 2 (16.7%) | 3 (20%) |
50–60 | 3 (25%) | 9 (60%) |
60–70 | 4 (33.3%) | 1 (6.7%) |
70–80 | 1 (8.3%) | 1 (6.7%) |
Sex | ||
Male | 6 (50%) | 2 (13.3%) |
Female | 6 (50%) | 13 (86.7%) |
Relationship to patient | ||
Spouse | 10 (83.3%) | 15 (100%) |
Parent | 1 (8.3%) | 0 (0%) |
Cousin | 1 (8.3%) | 0 (0%) |
Diagnosis of patient | ||
Oligodendroglioma grade II | 2 (16.7%) | 3 (20%) |
Astrocytoma grade II | 1 (8.3%) | 1 (6.7%) |
Oligodendroglioma grade III | 0 (0%) | 3 (20%) |
Astrocytoma grade III | 1 (8.3%) | 2 (13.3%) |
Glioblastoma grade IV | 6 (50%) | 7 (46.7%) |
Medulloblastoma | 1 (8.3%) | 0 (0%) |
Meningioma | 1 (8.3%) | 0 (0%) |
Time since diagnosis | ||
<1 year | 1 (8.3%) | 5 (33.3%) |
1–2 years | 5 (41.7%) | 1 (6.7%) |
2–3 years | 2 (16.7%) | 3 (20%) |
3–4 years | 1 (8.3%) | 0 (0%) |
4–6 years | 0 (0%) | 1 (6.7%) |
>6 years | 3 (25%) | 5 (33.3%) |
Disease status | ||
Stable disease | 2 (16.7%) | 10 (66.6%) |
Disease progression (suspected) | 4 (33.3%) | 2 (13.3%) |
Under treatment | 6 (50%) | 3 (20%) |
Experiences with supportive care for caregivers
Topics | Key issues | Themes | Participant groups |
---|---|---|---|
Formal support | Emotional support | Nurse(-specialist) | Both groups |
Psychologist | Both groups | ||
Social worker | Both groups | ||
Peer support group | Both groups | ||
Medication (e.g., antidepressants, sleeping pills) | Both groups | ||
Religious services | US group | ||
Practical support | Nurse(-specialist) | Both groups | |
Meals on wheels | US group | ||
Transportation service to/from the hospital | Dutch group | ||
Legal advice, e.g., preparing a will | Dutch group | ||
Help with completing tax forms | Dutch group | ||
Needs screening in clinic | Questionnaires in clinic without feedback or referral | Both groups | |
Informal support | Social support | Family and friends being there in the hospital | Both groups |
Supporting each other through tough times | Both groups | ||
Family and friends watching the patient when the caregiver’s away | US group | ||
Family or friends setting up Facebook account to provide support | Both groups | ||
Family member coming back to live at home and provide support | US group | ||
Community members praying for patient and caregiver | US group | ||
Practical support | Making dinner, bringing food over to the house | US group | |
Getting groceries | US group | ||
Helping with household chores | US group | ||
Helping the patient get ready for the day | US group | ||
Providing a wake-up call service | US group | ||
Friend with medical background would answer questions | US group | ||
Financial support | Taking up a collection to support a housekeeper | US group | |
Raising money to help pay for medical bills | US group | ||
Raising money to provide patient and caregiver with a dinner date | US group | ||
Support from work | Flexible work hours | Caregiver is allowed to leave work early | Both groups |
Caregiver can take leave when needed | Both groups | ||
Caregiver can cut back on hours, or work more depending on the situation | US group | ||
Flexible work place | Caregiver can work from home | Both groups | |
Flexible responsibilities | The duties at work are adjusted because of the mental state of the caregiver | Dutch group | |
Work-based formal health services | Counselling service for mental support | Dutch group | |
Company doctor | Dutch group |
‘They took up a collection through a variety of different things. They had a housekeeper come in and clean our house for 6 months. For 6 months! They paid for it. […] It was tremendous.’Husband of GBM patient who is currently under treatment
‘Oh I think we need something! We’re not professionals, we don’t know what we’re doing. […] Are we making it better, are we making it worse? We don’t know, we’ve not been in this situation before.’Cousin of meningioma patient with suspected disease progression
Attitudes toward keeping track of care issues over time
General attitude
‘I don’t know if there’s a disadvantage, other than the fact that it’s time consuming. It takes time to do that and it takes discipline. You have to have discipline to sit down and journal. […] And this, I look at this company, forget whether it’s health related, if we ask people to journal, so they knew what they were spending their time on and what was most important to them during the day, we probably get about 5% compliance. It’s just, that’s a hard thing to do on a regular basis.’Husband of GBM patient who is currently under treatment
Frequency and timing
Format
‘This is just a concrete yes or no. And it could be like oh I’m having a little bit of a problem with child care or I’m in desperate need of help. And this kind of tells you how big of a problem each individual thing is.’Wife of oligodendroglioma grade II patient with suspected disease progression
‘Will it provide some way to foresee down times and be able to… You know, help reduce the stress to look for a way to kinda work around it? I don’t know, I’m not sure that I could… That it would have like a lot more value than ‘hmm that’s interesting’. Would it really, would I find a way to make it a less stressful time? You know based on that? I’m not sure it would.’Husband of patient with medulloblastoma who is receiving treatment
‘I like it ‘cause you could do it at your house, whenever you want to, privacy of your home, be comfortable, and you know. It’d just be you and the computer. I like that.’Wife of patient with astrocytoma grade II who is under treatment
Topics | Key issues | Themes | Participant groups |
---|---|---|---|
Type of monitoring instrument | Preference for… | ||
Paper-based with personal feedback | It is quick and easy to complete | Both groups | |
Would provide a quick overview of the needs present | Dutch group | ||
Not interested in using computers | US group | ||
Fully digital | Can be completed at home, which is comfortable, allows privacy, and time to focus | Both groups | |
Feedback on needs and issues is provided instantly | Both groups | ||
Professional advice for referral to supportive care is provided instantly | Both groups | ||
The data and feedback are trusted to be accurate | Both groups | ||
It is always accessible, flexible | Both groups | ||
Allows you to go back to the advice to read at leisure | Dutch group | ||
Requires less action than other methods—you just complete questionnaires once and it’s done | US group | ||
Saves paper, probably cheaper in long run | US group | ||
Blended care (i.e. digital with personal contact) | Digital option would suffice when there is no great need for support; adding personal contact would only be required when needs arise | Both groups | |
Might suffice to just add the option to actively contact someone if need arises | Both groups | ||
Personal contact can help verbalize issues | US group | ||
Personal contact provides extra support—talking can help to relieve stress | US group | ||
It is more interactive | Both groups | ||
Reasons for (non)use of any instrument | Perceived as beneficial | Most likely to use if there are needs present | Both groups |
Would only continue to use if there is perceived benefit | Both groups | ||
Clarity | Should be clear and easy-to-use | Both groups | |
Investment of time | The likeliness to use an instrument is dependent on the time it takes | Both groups | |
Should not take more than 10 min to complete questions | US group | ||
Available resources | Would only be useful if supportive care is actually available to them | Both groups | |
Resources should fit neuro-oncology specific needs | Both groups | ||
Guide toward good information, good supportive care options, and good stress-relieve techniques | US group | ||
Recommendation by treatment team | Would not seek out a monitoring instrument without recommendation by treatment team | Both groups | |
Would help recognize that it is not just another internet resource | Dutch group | ||
Recommendation would help as incentive to start only | Both groups | ||
Continued use | An extra incentive is necessary for people to continue to keep track: money or a personal coach | US group | |
Reminders are needed to continue use, especially when things are going well | Both groups | ||
A personal (face-to-face) reminder for use can help | US group | ||
Reasons for (non) use of digital instruments | Anonymity and privacy | Easier to be honest about your feelings when you feel like you’re by yourself | Both groups |
Easier to answer questions presented digitally when stressed | US group | ||
Privacy is a prerequisite; can be difficult to answer questions when patient is looking over your shoulder | Dutch group | ||
Accuracy of digital data | Data is accurate and easy to quantify for clinicians/researchers | US group | |
Limit information | Presenting one question at a time can help to retain focus | Dutch group | |
Be wary of information overload on computer systems | Dutch group | ||
Automatic saving | Can help to save answers frequently and automatically | Dutch group | |
Computer and internet access | Would not use the instrument on a public computer | US group | |
Slow computer would discourage use | US group | ||
Mobile solutions | Mobile solutions might be better than PC-based ones | Both groups | |
Apps are always available | US group | ||
Computer literacy | Good to very good computer literacy | Both groups | |
Can use the computer for ‘simple things’, including google, home shopping and banking | Both groups | ||
Can use the computer but is not very used to it | US group | ||
Not one to sit in front of a computer | Both groups | ||
Not computer literate, can’t even turn it on | US group | ||
Most elderly people can also use the computer nowadays | US group | ||
Can be difficult for older people | US group | ||
Alternatives | For those not computer literate, a paper questionnaire might be used as an alternative | US group |
‘So I think if you maybe had the answers like the short answers and then give the opportunity to say tell me what you meant by this. And then it will all come out. To give them the opportunity to not be hit by it all of a sudden.’Wife of oligodendroglioma grade II patient with suspected disease progression
Conditions for use
‘I think some people would say yeah that’s a good thing, the doctor’s telling me that. There’s other people who’ll forget about it once they’re in the car. There has to be constant reminders. […] Just an idea, some kind of marketing pushout to people on a regular basis.’Husband of patient with medulloblastoma who is under treatment