Background
Methods
Study design
Recruitment
Participants
Characteristics | Number |
---|---|
Sex | |
Male | 6 |
Female | 24 |
Age (years) | |
Mean | 46.6 |
Range | 23–73 |
Type of employment | |
Employee | 19 |
(Partially) self-employed worker | 11 |
Working hours | |
< 30 | 16 |
> 30 | 14 |
Focus groups
Data analysis
Ethical considerations
Results
Personal and Environmental facilitators | Disclosure |
Communication and expression of one’s needs | |
Decision-making based on what is important in life | |
Perseverance and securing boundaries | |
Environmental facilitators | |
Environmental barriers | Knowledge and regulations in the workplace |
Occupational and medical health services | |
Social security | |
Support needs | Support available to all workers |
Characteristics of the ideal supporter | |
How and when to offer support |
Disclosure
Some participants had not disclosed their condition to their employers. Just having started a new job, or fear of losing their jobs were mentioned as reasons for non-disclosure. One participant explained that she kept getting better at making excuses for her inability to perform certain tasks and even wondered herself why she did not disclose her condition.“In solidarity with my colleagues, with whom I always have a very involved relationship, I had something like this: “this is going on in my life, so just as I tell you what I do over the weekend, I also tell you about this (the chronic condition)”.” (FG1, employee)
Communication and expressing one’s needs
“One day you are able to do it (certain tasks), while the other day….But that really means, and that is a victory I have had to achieve for myself, is that I have to ask. If I do not succeed, then I must say it, because someone else […] no one sees that I am sick.” (FG1, employee)
Decision-making based on what is important in life
“Sometimes, I make a conscious decision to go beyond my physical limits because I know I will feel a lot better mentally. I prefer to lie down on the couch the next day like a dead bird and having enjoyed something that I really wanted to do, than be at home and feeling physically okay and think, shit now, I am not part of that (social activity)…” (FG3, employee)
Perseverance and securing boundaries
At the same time, guarding boundaries was another crucial facilitator for workers to stay at work. Many participants expressed their difficulty with maintaining boundaries and saying “no” if their workload was too great. Some self-employed workers pointed out that they could decide for themselves how much work to take on. This helped them find the right balance between work, health and personal life. This flexibility was considered to be the great advantage of being self-employed. However, for most self-employed participants, this flexibility was not the reason for becoming self-employed, since the majority had already been self-employed prior to their diagnosis. Having a partner as main breadwinner facilitated this flexibility.“I have been in a Facebook group of the Rheumatism Fund and there were only people complaining, “Oh, I have such pain today, yes, so do I”. You know, I got out, I was in it for two days, and I was completely mad. I don't want to be negative, I want to be positive, I want to move forward, I want to look the other way.” (FG1, employee)
“You know, and now I can just say “no, I can't do it next week”, while I have a very empty agenda, so to speak, but I, there is no one checking up on me.” (FG4, self-employed worker)
Environmental facilitators
Some participants mentioned patient organizations or other groups that provide practical information and support. One participant described the availability of such an organization located in the hospital:“They themselves have looked at what is useful to do within the organization, what is needed, the study is also paid, that is really ideal.” (FG3, employee)
“I always saw it as a kind of tourist office, they had all sorts of information, they had contact with physiotherapists, they knew everything about high / low desks, rolling stools that were good for people with Bechterew's disease, they had all sorts of information and they were indeed constantly calling out “do you need something, are you doing well at work?”” ( FG3, partially self-employed worker)
Knowledge and regulations in the workplace
This lack of knowledge coincided with prejudices about certain chronic conditions and a worker’s ability to perform with their condition. A possible result was patronizing or a permanent take-over of certain tasks by co-workers. Some participants explained that this presented a barrier for disclosure or requesting support.“Because my supervisor, who thought for me: “I will make the decision for her whether she is allowed to do this or that or that. Or being capable of.” And that is of course, without any consultation, a painful matter. And of course, very frustrating.” (FG2, employee)
Participants also mentioned their struggle with rules and regulations within their organizations and how these were applied by managers or supervisors. Several participants mentioned that in some cases regulations were applied at random and not in a fair way.“But, I am not so fond of patronizing, it is not meant to be wrong, it is only: “Oh, how are you now”? Well, it makes me itch when I think about it and that's why I have sometimes said: “Did I do right to disclose”?” (FG1, employee)
“Organizations have their own rules, which are then applied randomly.” (FG2, employee)
Occupational and medical health services
A major barrier brought up by a large number of participants was the health care professionals and medical specialists’ lack of attention to employment and paid work during the course of treatment, despite the importance of work for these workers.“And then at some point he did have a tip, the think-along tip, so I work three days, right, 20 hours. Yes, then I could divide those 20 hours over 5 days. Well, I didn't think that was such a good tip.” (FG2, employee)
In some cases, this led to advice by medical specialists to quit working or at least reduce working hours:“It would also be nice if a specialist already offered this (information on working with a chronic condition), because working is just very important for everyone. I think that this subject (work) is underexposed, also by the hospital itself, but that is my experience.” (FG2, employee)
All participants had to deal with doctor or hospital appointments and visits to other health care professionals, such as a physical therapists. These appointments had a significant impact on their work, because in most cases they were forced to plan their appointments during working hours. According to participants, it would be helpful if these appointments could be made in more suitable hours, thereby lessening the impact on their work.“I do not cooperate with him (the specialist). He really finds it amazing that I am still working. He says: “Then reduce (in working hours) a little, then reduce a little”.” (FG2, employee)
“The physical therapist for people with rheumatism is available on Tuesday afternoon at one o'clock and Friday afternoon at one o'clock. And if you work all day, then one o’clock is a terrible time […] then you have to exercise for an hour, get stressed out back to work and then you actually still have to work. But you actually don't have the energy anymore to work. So, you know, it (the consultation with physical therapists) just has to be offered in the evening too.” (FG1, employee)
Social security
None of the self-employed workers had occupational disability insurance. The difficulty of finding insurance with an already existing health problem and the size of the premium served as barriers for obtaining this insurance for self-employed participants. The absence of this financial safety net created feelings of insecurity. Additionally, the self-employed participants spoke about their difficulties with receiving support; they have no one to turn to compared to employees who can ask for help from their employer or occupational health professional. Some self-employed participants explained that they sometimes ask their physical therapist, specialist nurse or friends for advice on how to cope with certain problems.“I am still able to work, I still work now. So I can work and then you get advice: “why don't you do volunteer work?” And now, I get the advice: “You have to work fewer hours because otherwise we will give you a fine and we have to reclaim your benefit and everything.” So, next month, I'm going to work fewer hours, but only on paper. So I am actually going to work my own hours, sort of like doing volunteer work in my own job or something.” (FG1, employee)
One participant spoke of the lack of information provided by the DSSI. She knew the DSSI could offer some support, however, when she contacted them, no one could help her.“So, there is no contact person, there is no one focused on self-employed entrepreneurs, and therefore there is absolutely no help, you must have had very good assertiveness training first before you can get any help at all.” (FG4, self-employed worker)
“But for work things you actually have nothing. But it seems, although there is nothing on writing, but the DSSI can certainly help you make your work easier. […]But there is nobody (at the DSSI) available. If you call the DSSI nobody knows anything.” (FG4, self-employed worker)
Support available to all workers
More support for self-employed workers must also be made available, as illustrated by one participant describing her search for someone who could offer support:In my ideal situation, there is a company doctor at an outpatient clinic where you don't have the hassle that a medical specialist says A and a company doctor says B, but that together they eh. And then, the company doctor is also accessible for people like us who are self-employed, but also for people who are looking for a job. They (people looking for work) also do not have a company doctor.” (FG2, self-employed worker)
“Yes, I am very much looking for someone who can help me. And I am also wandering in the desert of a rehabilitation doctor, company doctor, ‘Heliomare’ (a rehabilitation clinic), and what else…” (FG4, self-employed worker)
Characteristics of the ideal supporter
Several participants pointed out that the person offering support should serve as a coach or sparring partner. A wide variety of supporters were mentioned when asked who is the most suitable person to take on this supporting task: specialized nurses, social workers, occupational therapists, independent advisors, experienced experts or occupational physicians. Occupational physicians were often mentioned by participants in paid employment, since they could play a bridging role between the employee, employer and medical specialist.“But, say in the guidance there must be an eye on one’s motivation. For some, the motivation to work is pure money, so okay, […] but how are we going to ensure that I have my money at the end of the month? […] now you are now being thwarted in working while your motivation is in the work itself. So I think there should also be an eye on that.” (FG1, employee)
How and when to offer support
Participants spoke about the various areas where support is needed. It became clear that information is needed on the rights and obligations of employees and employers with regard to sick leave and social security. Practical advice on work accommodations and job coaching were also mentioned as areas for support. Some participants spoke about the need for a sympathetic ear whenever they just want to talk.It's about searching for that piece of customization, you would want someone who makes a tailor-made suit for you, I say.”(FG3, self-employed worker)
“Of course, there is always a bit of emotion added, we all have bad moments, that we are at the end of our rope, for whatever reason. I need a listening ear and understanding, recognition.” (FG4, self-employed worker)