Experiences of returning to work after brain tumor treatment

Abstract

BACKGROUND:

Work participation has a profound influence on the individual’s overall health and well-being. Cancer survivors are at risk of unemployment, and the people with the highest risk are diagnosed with cancer in the central nervous system. Many diagnosed with this cancer survive and try to return to a normal life including work participation. Experiences related to returning to work after brain tumor treatment seem to be an unexplored phenomenon.

OBJECTIVE:

The current study focuses on the gap in the scientific literature concerning the individual experience after undergoing treatment for brain cancer and the return to work (RTW) process.

METHODS:

Semi-structured in-depth interviews were conducted with four informants, and a thematic content analysis of the transcribed data was used.

RESULTS:

The results show RTW among our informants as a process consists of three main themes: easier said than done, from mastering to the feeling of inadequacy, and the environment’s impact. The categories various components may be relevant.

CONCLUSION:

In a health promotion perspective, several resources such as aspects of motivation, self-awareness, and opportunities for facilitation and empowerment need to be available in the process of RTW for individuals who have undergone treatment for brain cancer.

Keywords

Brain tumor acquired brain injury health promotion

1 Introduction

An increasing body of studies has a focus on what promotes health instead of what causes illness [1, 2]. A health-promoting perspective implies an emphasis on the resources available to individuals and how they benefit from the resources [1, 2]. Work is considered a powerful resource that influences individuals’ health and well-being [3]. Adults spend more time working than engaging in any other activity, and in western societies work is closely connected to the individual’s experience of identity [4, 5]. Employment is health promoting because it ensures economic independence [6]. Work is considered a meaningful activity [3], and for some, being employed and making use of one’s resources is even more important than the level of the salary [7, 8]. Individuals that return to work (RTW) after illness often experience increased self-confidence, improved physical functioning, and reduced psychological distress [6]. While, in contrast, individuals who do not manage to RTW often experience an increase in anxiety, depression, social isolation, a reduction in physical health, and loss of identity [6 , 9– 11]. RTW is, for many individuals, the most important indicator of being rehabilitated into a normal life after being ill, in addition to providing a positive distraction from diagnoses, ailments, and treatments [11, 12]. An increasing proportion of individuals who receive medical treatment due to cancer survive, and about 60% manage to RTW within one to two years after treatment [13, 14]. However, individuals treated for brain cancer stand out from other cancer survivors because they are less likely to return to work [15, 16]. The purpose of this study is to investigate the experiences of individuals who have returned to work after treatment for brain tumors. We will realise this in a health promoting perspective in order to expand the understanding of important work-promoting resources and the ways the individuals in this study benefitted from them.

Various kinds of cancer differ a great deal in the course of illness, treatment, and outcome [16]. Consequently, the impact of cancer on RTW may be experienced differently by the individual [17]. There are indications that brain cancer survivors experience more work limitations than other cancer survivors, due to neurocognitive, physical, and psychological effects of the disease and treatment [18].

In Norway, 11,458 individuals were living with cancer in the central nervous system in 2014, according to the 2015 Cancer Registry of Norway [19]. About 1,000 adults are diagnosed with brain cancer each year. Of these, up to 75% are alive 10– 15 years after having been diagnosed [19]. Most of these individuals are likely to want to RTW. Although the rates of RTW among cancer survivors is becoming well documented, few have investigated RTW and the retention of work, work absence, and the workplace experience from the point of view of the cancer survivor or other stakeholders [20]. While there are studies that show how the ability to work positively affects the perception of the quality of life among brain cancer survivors [21], the existing literature concerning how such individuals experience RTW is scarce. However, there is a relatively large body of research on RTW among individuals with other forms of acquired brain injuries [22]. RTW, after acquired brain injury, is often associated with the will to return to work, continuous improvement in functioning, and knowledge and support from employers, colleagues, and medical personnel who focus on RTW [23, 24]. The most common barriers for RTW among cancer survivors, and other individuals with acquired brain injuries, is related to fatigue, cognitive and emotional problems, and loss of work-related self-confidence [11, 23].

The current study focuses on the gap in the scientific literature concerning the individual experience of the RTW process after undergoing treatment for brain cancer. The research question is: How do individuals who return to work after treatment for brain cancer experience the RTW process, and how can their experiences be interpreted in a health promotion perspective? To interpret in a health promotion perspective implies an emphasis on aspects that contribute to the maintenance and improvement of health, in contrast to focusing on aspects that cause disease and lowered function [25].

2 Methods

2.1 Design

The study has a qualitative design in order to increase understanding of the RTW process after brain cancer treatment [26]. In-depth interviews were conducted to explore how the participants experienced the RTW process. Participants were informed about the study design both orally and in writing by the first author. They were also informed that the data would be treated confidentially, participation was voluntary, and they could withdraw from the study at any time. Written consent was obtained prior to each interview. The study was approved by the Regional Medical Committee on Research Ethics (2014/1544).

Table 1
The informants

”Name” Age Marital status Employment Before Employment Now Profession Education

Truls 30’s Single 100% Seeking employment Service Employee / Assistant Manager No higher ed.

Kari 50’s Married. Several children 100% 20% Office Employee Higher ed.

Harald 30’s Married. Several children 100% 100% Industrial Worker Higher ed.

Liv 30’s Married. One child 100% 30% Service Employee Higher ed.

”Name”	Age	Marital status	Employment Before	Employment Now	Profession	Education
Truls	30’s	Single	100%	Seeking employment	Service Employee / Assistant Manager	No higher ed.
Kari	50’s	Married. Several children	100%	20%	Office Employee	Higher ed.
Harald	30’s	Married. Several children	100%	100%	Industrial Worker	Higher ed.
Liv	30’s	Married. One child	100%	30%	Service Employee	Higher ed.

2.2 Sample and reflections on reliability

A purposive sampling strategy was applied. Inclusion criteria included having received treatment for brain tumors and being employed both prior to and after treatment. Criteria for exclusion were linguistic problems prior to treatment, such as aphasia. The Brain Tumour Association in the mid-region of Norway recruited participants. Four participants signed up after receiving mail from the Association and they were contacted by the first author. The relatively small sample was considered a possible flaw to the study if saturation was not achieved in the analysis. Therefore, we attempted to recruit participants by “snowballing”. However, this did not lead to additional participants. There are several possible reasons for the difficulties in recruiting. First, not many people who have received treatment for brain tumors are able to RTW and, second, participating in a study may be too much for individuals struggling to regain or maintain work. We considered recruiting participants from other parts of the country and conducting telephone interviews. However, this would have restricted the in-depth character of the data material and was consequently rejected. Given the relatively small sample, we were aware the interviews should yield rich information and, therefore, much work was exerted into the planning and preparation of the interview guide. In retrospect, we argue our findings are supported by other studies and this is an indication of reliability. Another possible limitation to the study may be that the transcribed interviews were translated from Norwegian to English. We are aware that the translation might have changed the meaning slightly. To minimize this source of bias we carefully discussed each quotation and statement that could be understood different. Also, our choice of perspective might have affected the interpretation of the data material, however, the support for our findings and interpretations found in other studies adds to the trustworthiness of the current study.

The participants are presented in Table 1. Truls received a brain tumor diagnosis about four years before the interview was conducted, and Kari, Liv, and Harald each received a diagnosis about five years before the interview. Their symptoms, after undergoing treatment, were mainly cognitive and related to fatigue, concentration problems, mood swings, and problems with stress management. All participants were working less than before after diagnosis and treatment, and they all experienced changes in the work situation.

Table 2
Examples of themes and categories of meaningful units

Topicalisation Categories Quotations

Back at work 100% after a couple of months Expectations of RTW “Then I was a little like; everything like before? Then I’ll be back at work 100%, after a couple, three months (Liv).

To be a minus Reduced confidence in work life “(I)... am sort of a minus” (Kari).

Adjustments of work tasks is everything Adjustments “To get the adjustments in (...) really is everything (...) in relation to the job” (Truls).

Those who are closest have a lot to say – hard without Support from relatives “It’s clear that those who are closest to me; wife, parents. It means an awful lot to say that you have a support system around you. You need to have that... If not ... it becomes terribly hard” (Harald).

Topicalisation	Categories	Quotations
Back at work 100% after a couple of months	Expectations of RTW	“Then I was a little like; everything like before? Then I’ll be back at work 100%, after a couple, three months (Liv).
To be a minus	Reduced confidence in work life	“(I)... am sort of a minus” (Kari).
Adjustments of work tasks is everything	Adjustments	“To get the adjustments in (...) really is everything (...) in relation to the job” (Truls).
Those who are closest have a lot to say – hard without	Support from relatives	“It’s clear that those who are closest to me; wife, parents. It means an awful lot to say that you have a support system around you. You need to have that... If not ... it becomes terribly hard” (Harald).

2.3 Data collection

The interviews took place in the participants’ homes or at university locations and were conducted by the first author. Each interview was recorded and they lasted from 45 to 120 minutes. All interviews were transcribed verbatim and consecutively. A semi-structured interview guide was used to mildly control the course of the interviews. It was conveyed to the participants that we were interested in their stories as well as their reflections, opinions, and thoughts concerning why and how incidents seemed to happen. Examples of questions were: ‘Tell me about your RTW process?’ ‘How is your working situation now compared to prior to your brain tumor treatment?’ ‘Can you tell me about your positive experiences with the RTW process?’ ‘Can you tell me about your negative experiences with the RTW process?’ and ‘What does your work mean to you?’ In order to achieve rich information, the interviewer thoroughly followed up on stories, hints, and unexpected statements that the informants uttered. We chose to focus on in-depth information on a few themes instead of covering a wide range of topics.

2.4 Data analysis

We conducted a thematic content analysis divided into five steps [26]. The first three steps were conducted separately for each interview. First, the texts were reduced to thematic units. Second, the units were arranged in different categories that structured the texts. The third step included filling the different categories with content by extracting quotations from the interviews to illuminate the meaning of the categories. An example of the first steps in the analysis is shown in Table 2. The fourth step included comparing the interviews while looking for similarities and differences. In this process, new categories appeared. An example was three participants talked about experiences with RTW in connection to their expectations from the start. This category was not visible until comparing the interviews, and led to a deeper understanding of the participants’ RTW processes. The last step of the analysis was to search for all possible explanations and to connect those to the interviews. This was an ongoing maneuver, from conducting the interviews to the writing of the article. It is important to notice even though the analysis was systematic and we were obedient to the method, the process more resembled a line with curves and loops than a straight line. We consider, in retrospect, that our efforts to constantly compare the interviews, codes, and categories, and try to see both the different parts and the whole story repeatedly was crucial to reach saturation of the categories.

3 Results

Overall, the results show RTW among our informants can be seen as a process consisting of three main themes: easier said than done, from mastering to the feeling of inadequacy, and the environment’s impact. The categories show various components that may be relevant in the process of RTW after brain cancer treatment.

3.1 Easier said than done

The informants had expectations that they would be able to work as before. Some of the informants had been told by health care professionals that everything would be back to normal in two to three months. Liv thought, ‘Then I was like: everything as before? Then I’ll be back at the job 100% after two to three months’. When Truls realised he would not manage to work as before, he still had some expectations about the RTW process. ‘It’s heavier than I thought. (...) I thought it would go pretty smoothly actually, to get a job after’, he said. The informants reflected in various ways on how the RTW process was not as easy as expected.

The informants increased the workload gradually. Liv explained she started in a 20% position and, within a year, she was back at work full-time. After a while, it became too much to bear. Several informants experienced ‘reaching the bottom’ at this point. ‘It was getting very tiring. I, therefore, reduced my position, first to 80%, I think. Then, I was on sick leave for a year, and then I had work assessment allowance for one year’ (Liv). Truls said, ‘And then, after half a year working at 40%, I went up to 60% and worked that amount for a year. Before I reached the bottom a little bit’. The total load became too excessive. Harald also talked about ‘reaching the bottom’. ‘I managed (...) for a period, then it did not work at all. Then, I was on sick leave for a few months. I could not do anything, I just lied on the couch’.

After reaching the bottom, they had to learn to accept the consequences of brain cancer in order to move on and find a balance in everyday life, including work. Liv explained, ‘One has to change one’s comprehension about oneself sometimes, and think that, well, this is how it has become now. That even idiotic things that one normally wouldn’t give a second of thought suddenly have become tiring’. Harald said, ‘Once one accepts who one has become, one might start talking about finding the right balance: to find the middle ground, where you’re able to keep going without tipping either one or the other way’. Liv talked about her feelings when she decided to reduce her work hours. ‘When I gradually went from 50% to 30% work, it was probably because it became so much that I noticed that I was not able to be happy. I was not sure what it was, but I was sulky’, she said. She elaborated on her experiences with finding balance. ‘I could have probably worked more, but then it would affect other things. (...) a doctor at the hospital told me that (...). And, you are supposed to have a family too’, she remarked.

However, even when they achieved balance, the struggle to maintain employment remained an issue. Truls said, ‘In the inception phase, one fights to survive, but afterwards, the struggle to live begins’. The informants told stories about how they became tired from things they did not expect to be tiring. They experienced reduced capacity and struggled with daily activities. Harald said, ‘The most challenging thing actually is to get the days to add up when I have those downwards trips (...) try forcing oneself, really. If you just sit passively, it aggravates. (...) Just start with something, so it doesn’t stop completely’. Forcing himself to do things little by little was a strategy to regain capacity. There were feelings of loss connected to the experience of reduced capacity. As Kari said, ‘I miss being like a normal person during the day. To not be so tired’. This reveals the loss of capacity was both a physical and an emotional burden that contributed to the experience of finding oneself in a constant struggle.

The findings indicate informants experienced that the constant struggle was a fight worth taking because they felt work positively affected their health.

Harald said, ‘I do not think it (health) would be any better if I hadn’t been working. I’m quite convinced, actually’. Truls also felt that being able to work affected his health in a positive way: ‘Working affects me mentally. You are at work, you are mastering and you are social, rather than maybe staying at home alone. I cannot see anything negative in being at work’. Although regaining work participation and remaining employed can be a long and exhausting process, the informants believed it was a battle worth taking because in their experiences work participation had beneficial health effects.

3.2 From mastering to the feeling of inadequacy

Another finding indicates the informants experienced loss of work confidence. Even though they were employed, they talked about how they had become insecure about their own work skills and fearful about their chances in the labor market. The fear of not finding a new job or losing the present job might underscore the feeling of fragility in the labor market and the importance of being employed.

For example, Liv said, ‘The most negative thing is perhaps my lack of confidence in what I can achieve. If I’d been out of the labor market and were seeking new employment, I’d notice that I do not have too much confidence that I would get a new job (...). One always measures oneself in relation to previous abilities’. Truls also emphasised his changing views on his own work skills. ‘You surely want the job, but you don’t want to deceive the employer by saying that you are so much better than you really are. You don’t want to talk yourself down, but somehow, you lay out all your limitations and reasons why you should not get the job’, he explained. The weakened confidence in their own work skills led to fear of unemployment. ‘I hope I don’t fall entirely outside the work life. That’s my biggest fear’ (Liv). Kari expressed her fear of being vulnerable if someone had to leave because of changes at the workplace. ‘There has been some talk about downsizing at my workplace. I am a little worried that the day will soon come’, she revealed. Truls elaborated on the theme. ‘When you compare yourself with others, you have reduced cognitive skills (and) you feel like you have been dealt a bad hand. You don’t feel like you have a strong case’, he explained. In another part of the interview, Truls said, ‘The main thing with it (returning to work) is taking back one’s life’. This quote may add to the understanding of why the informants expressed fear of losing what they had and why they kept fighting to retain work.

3.3 The environment’s impact

The experiences among informants varied regarding information and follow-up after surgery and treatment. The informants distinguished between information given during treatment and information received later. During treatment, the guidance and information received from surgeons and other health professionals were crucial in a recovery perspective. However, when it was time to move on with daily life, certain important aspects of managing the changes seemed to be emphasised less by health care professionals. Missing information on the way long-term effects from the brain cancer and the treatment might affect daily living was a finding across all the interviews. Harald said, ‘Information on how things might evolve over time, and the long-term effects. It is sad to say that it is absent, but that’s close to the truth. Mostly I had to find out everything for myself. That part (information) is lacking quite a lot’. The informants felt they were left to themselves and they were dependent on their own abilities to find information to which they could relate. Harald said, ‘And then, it is important what kind of information you find. Is it accurate and right for you?’ There were also examples of how health care personnel helped them to understand more of their situations. Liv spoke about her experiences at a rehabilitation centre: ‘I spoke to a psychologist and she talked a little about challenges one could have with cognitive things. I learned some things there’. However, the overall findings indicated that learning about, and reflecting over, what it might mean to the individuals to endure daily life with chronic symptoms was something they missed. This especially seemed to connect to RTW and what to expect, considering the time it may take to RTW, and the impact the long-term symptoms might have on work functioning.

Family and friends were important in the process of RTW. ‘Without them (my parents) I would not have been here. That is for sure’, Truls said. His parents had stood by him both during treatment and in the RTW process. Harald also experienced support from his loved ones and this was essential in the process. ‘It is very important to have a support system around you. It is necessary. Without that, it would have been terribly hard’. The findings indicate family and friends were important during the illness, the treatment, and in the process of RTW. There seemed to be an understanding that the RTW process was hard and somewhat lonely. ‘In the middle of treatment, you might not understand things yourself, in a way. In the treatment process, it is, perhaps, the people around you that experience and remember everything. But, it is you, yourself, that must fight afterwards’, Truls explained. The informants were aware of the difficulties their loved ones had to bear during the process. Harald talked about the burden on his wife. ‘So, it was probably my wife that experienced the hardest strain at first. So, it was tough for her. She had a breakdown because of it, I think’.

Having the ability to change work tasks and positions was experienced as important to manage RTW. ‘The adjustments at work really make all the difference’ (Harald). Harald experienced cognitive difficulties that made it impossible to perform his previous job tasks. He needed special adjustments: ‘So, now I don’t have a lot of work tasks that I have to do simultaneously. For the ability to multitask has totally disappeared’. They experienced that receiving the right adjustments at the workplace affected the mastering of the work situation. ‘I felt an immediate change when I got new tasks at work. I relaxed on a completely different level’, Harald said. He was able to work in a full-time position after the adjustments of work tasks. However, obtaining the right adjustments at work could be experienced as difficult. When Truls was looking for work, he experienced his needs for adjustments as a burden. ‘I notice that people appreciate that one is honest about it (cognitive problems), but at the same time, it inhibits you. You are not as attractive as others. So, I do not know if employers may think that someone seeking work has a lot of useful experience, but at the same time, he comes with many challenges and problems’. Kari did not feel support from her employer. ‘I thought it was ok for me to go back to work in a reduced position, but that was not the case. I was fired’. Then, she had to fight to be able to keep her job. ‘So, I talked to the union, and they helped me. We had to go a few rounds before I got a 20% position’. If the employer was not willing to make the changes the informants experienced as necessary, it was very difficult to be able to RTW. There were several stories about how the employer facilitated the RTW by making the necessary accommodations. As Liv said, ‘The boss has been (...) very good at facilitating. Sort of like, but, what do you need, when do you want to work, what is best?’ The employers’ understanding and their willingness to adjust was experienced as crucial to both being able to RTW and continuing to work over time.

4 Discussion

In the experiences of our informants, the RTW process started with expectations of a quick RTW after treatment for brain cancer. Lowered confidence in one’s own work ability and fear of unemployment followed, and the process of RTW was experienced as more difficult than expected. However, the ongoing struggle to RTW and then remain employed was experienced as worth the toil. Information and support from health professionals and support from family, friends, and the employer influenced the experience of RTW.

Our findings can be understood in light of the findings from a meta-synthesis of research on RTW after acquired brain injury, and the key concepts of self-awareness, empowerment, motivation, and facilitation [22]. Liaset and Lorås [22] found, in a health promoting perspective, all four aspects can be linked to both individual and environmental resources and how the individuals make use of them in order to return to work and to remain employed after illness.

In this study, we see the concepts are intertwined in a way that indicate a successful return to work and being able to remain employed require that relevant personal and environmental resources are available, and the individual has the skills and the opportunities to make use of them.

4.1 Increased self-awareness as a resource in the process of RTW

Liaset and Lorås [22] found self-awareness is an important criterion to be able to RTW after an acquired brain injury. Self-awareness is one of the first steps towards personal development. In this context which is in line with previous studies, it means to develop insight into one’s potential, to identify and understand one’s strengths and weaknesses, and to develop a realistic judgment of a given situation [27, 28]. However, cognitive outcomes can provide a lack of insight and self-understanding, and this may undermine self-awareness [29]. Matérne, Lundqvist and Strandberg [24] found that awareness of the person‘s cognitive and social abilities is essential for successful RTW after acquired brain injury. Furthermore, the severity of injury and the lack of self-awareness seem to be the most significant indicators for failing to RTW after a traumatic brain injury [27].

Our informants went through several phases before finding a manageable level of work. Studies indicate about 60% of stroke patients must reduce work hours more than initially anticipated [30], while other studies have found major, internal changes seem to encourage the willingness to make necessary changes in work tasks and environment [31]. An important turning point among our informants was ‘reaching the bottom’. ‘Reaching the bottom’ has been shown to have a positive effect on RTW because it consolidates the consequences of remaining symptoms and helps people to be more realistic in their work efforts [28]. Nevertheless, work ability may remain unstable for many years and become an inhibiting factor for work participation [8 , 33].

Gustafsson and Turpin [34] referred to the importance of finding the right balance between work and other activities, pointing out this is crucial to being labour active after stroke. Findings in our study indicate accepting who one has become, and gaining insight and understanding one’s work capacity, may contribute to finding the balance between work and other everyday activities.

4.2 Empowerment as a resource in the RTW process

To gain necessary skills and support, to be able to make appropriate decisions, individuals must have access to knowledge, information, and adequate support. Studies have shown that these elements are closely linked to empowerment in the RTW process [22]. Healthcare professionals are an important source of information related to RTW after a brain injury. However, information and support are often not given to patients, their families, and employers [30 , 36]. The current study indicates the informants benefitted from the information and guidance they had received, while at the same time, they experienced not attaining sufficient information and guidance. Saunders and Nedelec [11] also found this experience in cancer survivors.

Social support from next of kin affects the RTW process and may be a source to empowerment through positive personal development and increased self-awareness [22]. Social support leads to a higher level of contentedness in life and elevated feelings of well-being [37, 38]. In the current study, support from family, spouses, and friends was experienced as an essential element of the RTW process and during recovery from treatment. The informants recognised the process of recovering and regaining work had been hard for family and friends. Janda et al. [39] found next of kin often feel they are left without sufficient information to deal with the new situation. The supporters may benefit throughout the process from more information, education, and psychosocial support from health professionals [39]. In our study, the supporters were experienced as important in the process of recovery and RTW. There appeared to be an understanding that sickness had caused loved ones unnecessary pain and hardship. One may reason that giving more attention to supporters increases empowerment both for the individuals going through the experience of brain cancer as well as for the supporters.

4.3 Motivation as a resource in the RTW process

Despite reduced self-confidence and adversity, the informants expressed a great desire and motivation to RTW. Many studies found motivation is crucial in the RTW process after an acquired brain injury [22 , 27]. Motivation as phenomenon is often divided into extrinsic motivation and intrinsic motivation. Intrinsic motivation concerns feelings of pleasure and satisfaction through, for instance, going to work and doing something because it gives satisfaction and not because of duty [40]. Extrinsic motivation concerns conducting an activity because it leads to a particular result, separate from the work, that may lead to recognition, prestige, and reward [41]. External rewards and social contexts may affect one’s intrinsic motivation [42]. Despite many barriers, our informants were highly motivated to RTW. They expressed a great desire to work, to use their resources, and be productive and social. Therefore, our informants have both extrinsic and intrinsic motivation. This is in line with Antonovsky’s [25] assertion which states that an individual’s motivation to engage in a life area is influenced by how important the current life area is perceived by the individual. Work may be experienced as more important after an acquired brain injury than before the injury [28]. However, when motivation and expectations for RTW are too high and unrealistic, they are obstructive for RTW [31]. The health and welfare system can modify the unwanted effects of unrealistic expectations if the employee and the employer are informed and guided throughout the process [33].

4.4 Facilitation at the workplace as a resource in the RTW process

Several studies have shown facilitation, such as a change in work tasks or work hours, can have a profound influence on RTW after brain injury [11 , 30]. Findings in our study indicate being able to influence one’s own work situation was experienced as important for RTW. The informants experienced new work situations adapted to the new level of functioning so they could make use of their abilities. This is related to empowerment in the work situation and has been frequently found to be of importance for RTW [22, 35]. To achieve a high level of empowerment may be challenging for people with acquired brain injury because they need more facilitation and more feedback than other workers because they often are unsure of their own abilities [11]. Furthermore, retaining work participation over time presupposes a long-lasting attention to feedback and adaptation at the workplace [32]. In a health promotion perspective, adaptation at the workplace is a central aspect. More than 40% of those who succeed in RTW after brain injury have had work tasks, work environment, and/or work hours changed [30]. However, when the employer does not support adaptation in the workplace, RTW is less likely to occur [14]. The employer is likely to show more willingness and understanding for adaptations when he/she has sufficient information about how the brain injury may affect the work situation [33]. Culler et al. [31] found tailoring the RTW process within the workplace is less complicated with more information and support from health professionals.

5 Conclusion

In a health promotion perspective, several resources need to be available in the process of RTW for people who have undergone treatment for brain cancer. The resources include aspects of motivation, self-awareness, and opportunities for facilitation and empowerment in daily life, including work, family, and leisure time. The resources are in each individual and in the individual’s environment, and all aspects are interconnected.

Ability to RTW seems to require a fit between personal recourses, such as the ability to engage in personal development and to accept a new situation, support from health personnel, and an employer who is sensitive to the individual’s changing situation. This includes work capacity, understanding oneself, as well as recognising the importance of family and friends. Therefore, the process must enlist cooperation between the employee and the employer, the patient and the health care professional, and the person and loved ones. Our results indicate health care professionals have a vital role in promoting this cooperation. Individuals who have undergone treatment, their immediate family, and their employer need more information and follow-up post-hospitalization. The stories of the informants underscore how RTW is a social process, and the focus should be strengthening the resources for the person aiming to RTW.

Further research should explore how stakeholders can increase cooperation in the various stages of the RTW process in order to support employment. It would be highly useful for health professionals to develop a model that is sensitive to the changing needs of the individual, as well as environmental resources.

Conflict of interest

The authors report no conflict of interest.

Funding

The authors would like to thank the Research Group of Activity and Participation at the Norwegian University of Technology and Science for funding support.

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