Background
Methods
Design
Study participants and recruitment
Interviews
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the period sick-listed (e.g. how the days at the beginning, the middle and the end went down and how health and the ability to be active varied within the process)
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information regarding CMD and sickness absence
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the sick-listing process (e.g. support or lack of support from stakeholders, friends and relatives, and what worked well and not so well within the process)
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the path to recovery (regarding health and return to work), causes of CMD and sick-listing, and spontaneous ideas for web-based support.
ID | Gender | Age (years) | Education | Length of sick leave | Currently on sick leave |
---|---|---|---|---|---|
1 | Female | 34 | University | 3 months | No |
2 | Female | 41 | Secondary school | 2 months | Yes |
3 | Female | 33 | University | 15 months | Yes |
4 | Female | 55 | University | 5 years | Yes |
5 | Male | 53 | Secondary school | 10 years | Yes |
6 | Female | 44 | University | 3.5 years | Yes |
7 | Female | 20 | Secondary school | 3 months | Yes |
8 | Female | 33 | University | 2 months | Yes |
9 | Female | 52 | Secondary school | 2 years | Yes |
10 | Female | 54 | University | 7 years | Yes |
11 | Female | 34 | University | 3.5 years | Yes |
Analysis
Ethics
Results
Themes | |||
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Ambiguous roles challenge possibilities for moving on | Uncertain knowledge base weakens self-management | Perceived barriers and enablers for ending sick leave | |
Categories | The influence of demands and responsibilities | Understanding available information to make healthy decisions | The importance of time |
The significance and authority of the physician | Deficiency of knowledge | Managing everyday activities | |
The impact of roles in the workplace | The importance of support and recognition | ||
The need for coordination and continuity | Personal characteristics |
Ambiguous roles challenge possibilities for moving on
The influence of demands and responsibilities
The respondents put forward that they felt that they were expected to take wide-ranging responsibility for their own sick-leave process. This perceived responsibility to be active weighed heavy on them and was described as a source of worry over, for example, not being able to give the correct health information or suggest the most relevant intervention to the physician.… When you are feeling bad you still have to … keep nagging and calling and you get angry … or not angry, but annoyed, and you have to use so much energy even though you really do not have the strength. (F, 41, 2 months)
A certain amount of energy and strength seems to be necessary, and even expected in the sick-leave process. The participants also indicate that lack of this functionality is not neutral in the sick-leave process, but something that consumes energy, and therefore, could hinder the process from moving forward.And if you have to phone at a certain time, then you have to do it. On Monday they put me on hold. … So, I sat between eight o'clock and five, a full day … I decided, I have to get hold of these people. And the doctor said it, "yes, you are stubborn when you want." But that's not good. (F, 54, 7 years)
The significance and authority of the physician
Lack of continuity of physicians (e.g. because of temporary positions and changes) was experienced as complicating and delaying the process, and led to concerns about not being fully understood. Seeing a new physician at each appointment made it necessary to tell the same story repeatedly, reducing the options for discussing plans for the future.Because the doctor's appointment is an achievement, you kind of have an adrenaline rush during that meeting; so in that situation, it may be difficult for the doctor to see how bad you actually are. (F, 33, 15 months)
These concerns about not being fully understood led to feelings of uncertainty in relation to the next visit and to stressful feelings of having to formulate strategies for how to get a new certificate as an alternative to being forced to go back to work. This was further amplified when communications about the rules for being on sick leave and getting back to work were experienced as unconstructive. In some situations, the physician’s communication style was even perceived as threatening.But especially in the beginning, when there were new doctors every time. It felt like you had to repeat yourself; you had to tell the same story over and over again; you had to get to know a new person. (F, 34, 3.5 years)
The capacity to repeatedly, efficiently and convincingly portray problems and health status to the physician was described as a key functionality. In addition, the quality of the relationship was described as being potentially hampered by organizational limitations, such as frequent changes of staff and the extra explanatory burden it put on the individual.So after four months, you know, she was frantic, more or less. "Yes, but … You have to start working now". But I cannot work. (F, 44, 3.5 years)
The impact of roles in the workplace
Thus, when the workplace was experienced as a safe and well-known arena, with support from employer and staff, this became an enabling factor during the sick-leave process. However, when too much responsibility was placed on the person involved, or when there was a lack of interest and knowledge about how to support a sick-listed employee, the effect was the opposite.… Not at my usual workplace; it was at another place. And I crashed again, after … my six hours a week became way too much. (F, 44, 3.5 years)
The need for coordination and continuity
This category also includes statements about being the most important coordinator or being completely left out of the planning process. Uncertainty about getting the best treatment and the possibility of taking an active part in the planning were also discussed.But I have not received any information on how to handle the stress. Because at first they thought that I should talk to a counsellor, but then it never happened. And I do not know why. The health centre … . they said that occupational health care will take over my care and then occupational health care said “We cannot take you over” … (F, 41, 2 months)
On the other hand, coordination and consensus regarding the application of rules and about suitable interventions led to a feeling of security and an overview of what to relate to during the sick-leave process.You do not really dare to speak out. There are different people; it feels like there is no coordination, not even within their own house. They say they work in teams, but it does not feel like the team always has all the information. (F, 34, 3.5 years)
The participants expressed the need for synchronization between the individual’s specific situation and the possibilities for support within the health care and social security systems. This could further be interpreted as need for bridging between the individual functionalities and the contextual capabilities.But it feels like you should get more information but maybe just suggestions about getting help from a rehab coordinator. Because if you are paralyzed by anxiety and probably depression as well, you will not be able to talk to any of them [The Social Insurance Agency]. (F, 33, 15 months)
Uncertain knowledge base weakens self-management
Understanding available information to make healthy decisions
Uncertainty due to unclear information about rights, obligations and opportunities was expressed. Not knowing what the next step is as the basis for decisions and who is responsible for these decisions and actions led to insecurity.… I feel that I have missed something; this is it “How do you deal with anxiety?” … . I do not believe in CBT [cognitive behavioural therapy]. But, somehow CBT is done in Sweden, because the National Board of Health and Welfare says so. Yes, but show me that it's good. I can read research reports. I do not have difficulty reading information … but I do not have the strength to search for it. (F, 44, 3.5 years)
Clearer and more transparent information was asked for, such as a schedule for actions and how to prioritize these. This was related both to information about the sick-leave process and about options for treatment. The informants also felt insecure about how their information about the situation was perceived and handled.… It can take several years to come back. And I might have wanted to know that information from the beginning. First, being put on sick leave for three weeks does not mean you're healthy in three weeks. “We will probably put you on sick leave for much, much longer, but I want to get in touch with you at regular intervals.” (F, 34, 3.5 years)
Deficiency of knowledge
The individuals on sick leave needed information that they could rely on concerning the different options, but they also needed support or guidance in how to implement the chosen actions step-wise adjusted for themselves.… they have asked me what help I need. It is very difficult when you do not know what there is to choose from. I do not know; this information does not appear anywhere. (F, 20, 3 months)
Another knowledge deficiency concerns paying attention to early signs of illness and risks for sick leave. Examples were given about trying to solve the situation while struggling to stay at work, leading to a total breakdown before seeking health care.One thing that I think has been my main problem is that you have been told that exercise is great. … Mm, great. But what type of exercise? I could not work that out myself. I just want "now you have to do this". (F, 34, 3.5 years)
Not being able to understand and describe one’s shortcomings led to an inability to start making necessary adjustments to the new circumstances, both in the workplace and outside work. The perception of one’s own ability was sometimes overrated, both before and during sick leave.The great difficulty and lesson is not to ignore signals. And that's probably the hardest part. You notice that with people who “are” their working lives and so may not be on sick leave yet. But I can see quite strong signs or symptoms telling me that it is starting to be, you know, a risk zone. (F, 52, 2 years)
A lack of knowledge also occurred in other important instances during the sick-leave process. Shortcomings were described, both in the health care system and the Social Security Agency, concerning assessment of work ability, especially when factors at work and in everyday life coincide in influencing the ability to work. Shortcomings also appeared within the employer in adapting the work situation to the individual’s need for change and support.And limitations and … or not limitations, but values, have been incredibly strong. I have been doing just as much at home, with the children, driving and going here and there. And all the projects we have to do in the house and so on. In hindsight, I can see that it was doomed to crash. (F, 44, 3.5 years)
In this category, the need for new insights and new knowledge, from both lived experiences and professional expertise, became apparent. In other words, there is lack of knowledge in order to support the capabilities, both whitin the individual, as well as in the surrounding systems.… that they get a really proper reminder about rehabilitation responsibilities, what is important to think about, what … how you have to try to create conditions for this person to get back to work. And I was never offered job rehabilitation in that situation. This was one thing … it was actually an important thing that I never understood. Because I should not have worked. I should have been rehabilitated because I had no idea what I was or was not capable of. (F, 33, 15 months)
Perceived barriers and enablers for ending sick leave
The importance of time
She also highlighted:Time has been, again, a very important factor. To get … proper time to get back to who you are. So at first, it was very much about sleeping. (F, 34, 3.5 years)
Time was also considered as important for learning new aspects about one self. This was exemplified as learning how to handle the impact of illness, how to set limits for commitments, and how to speak up for one’s rights. To learn how thought patterns influence behaviour and everyday life was seen as part of the change towards recovery.I feel that even if I'm not completely healthy, I do not know if I will be healthier if I go home. And I need something to do with my time that I feel is meaningful. (F, 34, 3.5 years)
Another example was the ability to make new plans, for example, change of workplace.… a struggle every day to learn, to develop oneself, to get to know me. What are my challenges? What am I lacking? Or lack? Yes, but then what characteristics and behaviours and thought patterns do I have that affect how I behave? (F, 44, 3.5 years)
The respondents spoke about time as an enabling factor for changing inner resources. Having enough time during sick leave was also important to actually fulfil commitments, such as carry out treatment programs.But I have been too cowardly to resign from a permanent job. But now I feel it is not possible to work and I cannot sacrifice my health to work as I do … So this has taught me that you have to dare … (F, 41, 2 months)
Managing everyday activities
Allowing oneself to take part in activities that were enjoyable, such as skating, taking a walk in the woods or engaging in your personal interests, was experienced as health promoting. On the other hand, some had difficulties allowing themselves to have fun, because it led to a bad conscience and a feeling of slipping away from responsibilities such as return to work.It is very good to be out and work when you have depression, because you are forced to meet people. Even if you work only for a few hours, not full time, you meet people. So it's not really the best thing in my opinion to be on full time sick leave, because it's easy for you to just lie down and sleep and not get out. (F, 34, 3 months)
The participants also talked about how some everyday activities, including family relationships, were experienced as a strain when trying to focus on returning to work. This was exemplified as having the responsibility for children with special needs.I cannot do anything fun, because then I “play hooky”. (F, 34, 3.5 years)
Not being able to manage everyday activities could also be seen as an indicator of the individual’s capacity to cope with self-care matters, and even less ability to work.… Several of my children have special needs; this adds to the work involved in having children and taking care of a home, and than to be good enough about that … . (F, 52, 2 years)
These statements on the importance of everyday activities reflect the reciprocal relationship between inner capacities and contextual factors. External possibilities can lead to a stronger sense of self-efficacy, whereas the opposite can lead to stagnation in the recovery process.The Swedish Social Insurance Agency is forcing me to return to work as soon as possible, but I can not even cook for myself yet. (F, 33, 15 months)
The importance of support and recognition
One factor that emerged from the participants’ experiences of professional support was the importance of being listened to and that someone believed in their story. This mutual respect was vital for achieving recovery. The participants related issues about how their situation and inabilities were perceived and described in the sickness certificate, and uncertainty about whether you had fulfilled the conditions according to the sick-leave rules. Both private and professional support could also consist of practical help and support with daily activities, as well as planning the recovery process in small steps and making individual adaptations to proposed measures.The fact that you feel that you are not alone, you hear about other people's problems, and maybe hear how they managed, it allows me to handle my own problem, in a different way. … If you then have problems with resources, okay, then think that you should collect a few ideas instead of just from one person … . I met a very nice person at physiotherapy, and I now have contact with them and I can talk to them. We do not have the same diagnosis but we still understand each other's situation. (F, 34, 3.5 years)
Personal characteristics
On the other hand, personal characteristics such as high demands, passivity or lack of a driving force could work in the opposite direction.So I am stubborn as sin [laughs] and I place very high demands on myself. I want to be good so that I will return to being a part of society. (F, 34, 3.5 years)
Personal characteristics sometimes played an important role in the ability to adjust to a new situation. However, the impact of these qualities did not work in isolation, but appeared and were adjusted depending on the context.Yes, but it may be I have … it may be a negative self-image, or self-esteem, and as well as passivity or lack of drive or difficulty in starting … difficulties with initiation. (F, 52, 2 years)