Themes | Summary | Codes | Quotes |
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Overall evaluation of the course | The course was judged accessible and user-friendly. The non-professional caregivers were glad to take part in the experiment and most found it a pleasant experience. They also valued the course as being interesting, informative, educational and effective as well as useful and practical. The course was helpful in coping with the stressful situation of taking care of a depressed loved one’. The non-professional caregivers identified with the information presented in the course and found it applicable. Nevertheless, most caregivers reported the course could also be very confronting. Fortunately they felt the course offered enough support and empowerment and helped in processing the situation. All caregivers would recommend the course to others. Even if they are already involved in the treatment of their loved one suffering from a depression. | I would recommend the course to others I am glad to have participated in this course The course was great The course was confronting The course has helped me The course was practical The course was recognizable The course was accessible The course was strenuous The course was educational |
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Content | The content was judged mostly positive. In some cases caregivers were already familiar with the content or the content was not applicable to their situation. Fortunately, they were able to skip these themes. Most caregivers found no missing or incorrect information. During the course, the experiences of two non-professional caregivers were available. These were highly valued. It made the caregivers feel less lonely in their situation. Some expected the content would be focusing more on practical tips on how to better support their loved one suffering from a depression, as opposed to also focusing on how to look after yourself. The course themes were identifiable and illuminating. The information was clear and easily understood. The following aspects were mentioned in particular:
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Reading about others in the same situation is very pleasant I appreciated the ‘Black dog’ movies The exercise about grieving was very insightful I have been made aware about my automatic thoughts Useful how to better learn to take care of yourself Learning how to better communicate most practical and useful part of the course How to cope with suicidality was intense but realistic I had expected more focus on depression instead of me as caregiver There was no redundant content Information in the course confirmed existing knowledge |
What I really appreciated was reading about two other people and their experiences in looking after a depressed person (p5) I really appreciated the ‘Black dog’ movies, I shared these with more people in my environment (p1) What was really helpful and confronting for me is the realizations in the part about grieving. You're really saying goodbye to someone who has always been there and who is now a different person (p3). I have been made more aware about my automatic thoughts. Very useful, we all do that (p8) It was useful how to better learn to take care of yourself (p1) Particularly learning about how to communicate more effectively was very helpful for me (p8) The part about ‘dealing with suicidality’ was the most intense for me, because my partner is done with living. But it was very realistic and practical in nature which made it very helpful. Intense though (p5) I had expected more focus on how to deal with a depressed person instead of me as caregiver in taking care of yourself. I was not looking for that, it was useful though (p8) There was nothing there that felt like a waste of time (p4) Some things in the course you kind of know already, but to read it is kind of an extra confirmation (p3) |
Form | The form in which the course is presented was valued as pleasant and organized. The variety in themes is well-thought out. The style of writing was pleasant and easy to understand without sounding too simple or complicated (except for some misspellings). The tone is very friendly. Within the course an option was made available to fill in the name of your loved one which would then appear throughout the text and exercises. Caregivers found this option pleasant and helpful in making the course more personal, although they got a bit wary of doing this before every theme. Physically typing throughout the exercises was educational and for some more effective than talking. A number of caregivers found it unfortunate that the exercises were not available separately as well. Our subjects found it pleasant having the option to freely choose when you work on the course and on which theme. There were no technical problems reported and the layout was well organized. The videos were informative but not everyone watched them. The reasons range from having no sound on home computer to thinking watching videos is a waste of time. |
The form of the course was pleasant The variety in themes is well-thought-out. The style of writing was easy to understand The tone was friendly I was glad to be able to choose which modules I wanted to follow I have not seen the movies The lay-out was visually attractive The length of the modules was consistent There were no technical difficulties Physically typing the answers is more effective than talking It was a shame that I was not able to see my exercises in one convenient location |
The form of the course was pleasant and the variety in themes is well-thought-out. (p9) Very accessible and friendly in tone, no difficult language or something like that. Just very clear and practical (p5) It was very nice, being able to pick and choose which modules I'd like to follow (p10) I have not seen the movies, I followed the course at work, so I did not want to switch the sound on (P10) The lay-out was visually attractive and the length of the modules was consistent. I also experience no technical difficulties. As I work a lot with computers, I notice this kind of stuff (p2) When you write something down, it is more helpful in becoming aware of certain issues (p4) It was a shame that I was not able to see my exercises in one convenient location. In some other courses you can take home a workbook or something similar (p9) |
Use in everyday life | Although the course was accessible online, caregivers surprisingly did not find it easy to implement it in their weekly routine. Interestingly, a much cited reason for this is that they did not want their depressed loved one to have knowledge about their participation in this project. Mostly, to protect them from feelings of guilt or avoid conflicts. Because most caregivers live with their depressed loved one, this seriously limits the opportunities available to follow the course. Also, for most caregivers six weeks for the course was not enough to follow the desired themes, although each theme took approximately 1 h to complete. There was too little time to integrate the exercises in their everyday life during this period, although later on this would be possible. The caregivers did find it pleasant to be able to do the course in their own timeframe and some even developed their own routine. Many caregivers took notes during the course in order to store some information to aid them in the future. The length of the themes was valued as pleasant and consistent. Most caregivers preferred one theme a time because they feel that otherwise “their head gets too full”. Some caregivers experienced that caring for yourself consciously can be stressful and add more pressure in the short-term and they were not (yet) ready for this. |
My depressed loved one does not know that I am following this course I do not want to add to feelings of guilt Consciously taking care of yourself adds more pressure I followed one module in one sitting The course fits in everyday life I made notes during the course I would have liked more time to follow more modules |
I did not want my girlfriend to know I was following this course, it would have only made her feel more guilty and I did not want that (p2) You know you have to take care of yourself but that feels like a burden too. In the sense that you are so aware of it, like (sarcastic) ‘You know you can't afford to fall into pieces’. I am not ready for that, if I really look at how I am doing I would break down, so I focus on my son now (p6) I took my time and followed one module per session. Because it was a lot of information and I wanted it to sink in and it did need some time to sink in (p5) It was very easy for me to incorporate this course in my daily life. You just take your laptop on your lap on the couch for about half an hour whenever you want to and then you can come back to it later. (p3) There were very good tips throughout the course, I made lots of notes. I even had a little extra notebook (p5) I would have liked more time to follow more modules (p1) |
Effects of the course | Overall, the caregivers reported they have gathered a lot of information and many practical tools from the course. They report to have learned to stand up for themselves, avoid becoming overinvolved, set boundaries, communicate more effectively and to take better care of themselves. By participating in the course, caregivers also experience more awareness of the influence of the stressful situation on themselves. The caregivers felt less alone thanks to the experiences of others and learned to turn for more (professional) help for themselves. In some cases the changes in the caregivers also had a positive effect on the loved one as well. | I have learned to better look after myself I communicate more effectively now The course has made me confront the current situation I have sought out more professional help Before this course, I felt alone The hardest part was learning I am not able to solve everything The current situation has not yet changed |
For me, the course has learned me that I need to take better care of myself and set some boundaries. Because that is my weakness, neglecting my own needs (p3) I communicate more effectively now (p1) It has made me more aware and confront the situation, you know, just asking directly ‘how are you doing’ or ‘how can I help’ (p6) Two weeks ago, I made my first appointment with a mental health care professional for myself, you know, just to spar about the situation (p4) Before this course, I felt alone. My girlfriend did not want me to share anything with anyone. I now have included her parents and this has taken some of the pressure of me (p2) The hardest part was learning I am not able to solve everything and realizing that it was also not my fault (p8) The current situation has not yet changed, it is a long and ongoing process (p1) |
Feedback | Most caregivers reported, it was nice knowing the online coach is an actual person, present and always available for support. The coach did not give too many reminders. The personalized feedback was considered helpful and non-judgmental. Some caregivers also experience a barrier to contact someone they do not know face-to-face. Others report this as an advantage because they are able to stay anonymous. | Feedback was pleasant Feedback was non-judgmental It is hard to talk to someone who you don't see or have never met Reminders by the coach were sufficient When something you read gets to you, it is hard that you are not able talk about this directly |
Feedback was pleasant, very nice to have that option both practical and in supporting (p2) Very nice to receive feedback! Which was really helpful and practical and very non-judgmental. I really appreciated that. (p5) For me, I would not write my problems per mail probably because I have never met them. I can imagine it would work beneficial for others because you can remain anonymous. But for me, I would like to see someone face-to-face (p10) Reminders by the coach were sufficient (p1) When something you read gets to you, it is hard that you are not able talk about this directly (p2) |
Suggestions | When asked if the caregivers had additional suggestions for further development, responses could be grouped in several common themes: Form: Most importantly, caregivers requested a need to have the tools and information in the course to stay available in some shape or form for future reference. It would also be great if the course could continue to be offered for free. Other suggestions are to send a weekly reminder by text message and adding a pre- and post-evaluation accessible for the caregiver. Lastly, the two experience-experts shown throughout the course were both caring for a depressed partner. More variety in the role would be appreciated. Some caregivers had worries about their privacy. More explanation regarding confidentiality and security could be given. Content: According to some caregivers the course would benefit by adding stigma to the content. Caregivers report having to deal with both stigma from the depressed person themselves (i.e. “I am worthless”) as well as stigma from outsiders (i.e. “She just needs a good night's sleep”). Also, frequent comorbid symptoms were not mentioned or how to deal with them, for instance anxiety, aggression, substance abuse, etc. Also, some caregivers report that in setting boundaries and looking after themselves, the first reaction from their depressed loved one could be negative. They would have liked to be made aware of this beforehand as well as tips how to deal with this. |
I would have liked to continue having access to the course for future reference Sending a text message would serve as a useful reminder I would have liked to read the experience of someone who isn't caring for a depressed partner but is family I would have liked to read how to deal with stigma I would like to know how to deal with common factors that frequently co-occur with depression I want to know what happens with all the information I share Starting to take care of myself has led to a negative reaction from my loved one and I was not prepared for this |
It was really a shame that I could not look up anything after I finished the course. I would have like to have the information available in case I need it in the future (p4). Maybe a text message would have been helpful for me, because I get so much email as it is (p7) I would have liked to read the experience of someone who isn't caring for a depressed partner but for someone else, like a parent (p8) You are constantly defending someone from the outside world about what it is to have a depression. Even from the person who has the depression. That kind of stigma, I would have liked some practical advice about how to deal with that (p7) There are other things that come with a depression, like physical things and aggression and anxiety. This alters how you deal with someone. Maybe some advice on that? (p8) Maybe it is something you can extra highlight, you know, what happens with all the information you share and how it is protected and stored (p4) It is just hard to give someone all the extra attention they seem to require, and when I tried to explain that I couldn't, I didn't expect such a strong reaction and I felt that this was a little lacking in the course (p8) |
Other comments | Finally, there were a few overall comments not regarding the usability of the course. Mostly about the severity of the situation. In most cases the depressed loved one is not aware of the changes caused by the depression and in certain cases he or she is not open to seeking professional help. Caregivers are often in need of contact with fellow-sufferers. There is not much support or help available for caregivers with a loved one suffering from a depression which is why the current course was highly appreciated by many. | My loved one does not want professional help There is no support available for family of depressed patients I am frustrated with mental health care I worry about suicidality |
My partner does not want professional help (p2) I know there used to be support groups but they have all been cut in budget restrictions, which is frustrating because I think it would really help me and other people (p3) I am frustrated with mental health care (p6) I worry about my partner every time he comes home late or when I hear sirens because he has tried to commit suicide in the past (p5) |