The initial search at the social security agency identified 2465 eligible cancer survivors, from which we selected 230 eligible participants. For 13 persons, the address was not found in the municipal population register or they were deceased. We sent out invitational letters and informed consent forms to 217 persons, of whom 21 (9.6%) responded positively. Responding cancer survivors were contacted by telephone to inform them about the study and to check their availability. Seven and eight persons participated in the two focus groups, respectively. Additionally, we conducted one interview with two cancer survivors. Originally, this session was scheduled as a focus group with six participants, but on the day of the focus group, four cancer survivors had to cancel due to illness or personal matters. With only two participants, we will refer to this session as an interview and not as a focus group. In total, 17 cancer survivors participated in the focus groups and the interview.
For insurance physicians, we identified five peer review groups that were interested to participate in the study. However, after three focus groups, we decided a satisfactory level of data saturation was reached. In total, 23 insurance physicians in three groups participated in this study; the average number of participants in each group was eight (range 5–10).
The average duration of all focus groups and the interview was 2 h with a range of 1.5–2.5 h. The short questionnaire that aimed to collect demographic data was handed in by all participants except for one insurance physician. As the participants remained anonymous, we could not collect this insurance physician's information afterwards.
In total, 40 persons participated, i.e. 17 cancer survivors and 23 insurance physicians. The median age of cancer survivors was 51 years (range 31–58) and sixteen were women. The median age of insurance physicians was 52 years (range 28–63) and eight were women. An overview of participant demographics is provided in Table 3. Results are described per theme. For each theme, examples of quotes are inserted in the text to illustrate the findings. Furthermore, additional quotes per theme are provided in the Appendix.
|Cancer survivors (N = 17)|
|Age (years)||51 (31–58)|
|Year of cancer diagnosis|
|Type of employment (contract) when diagnosed|
|Temporary agency worker||3|
|Other type of employment||3|
|Employment status at time interview|
|Type of work after return to work|
|Volunteer elderly care||1|
|Insurance physicians (N = 22a)|
|Age (years)||52 (28–63)|
|Years of experience as insurance physician||14.5 (0.5–33)|
|Specialty in insurance medicine|
|Combination of specialties||6|
|Other tasks (e.g. judicial, education)||3|
|Young disabled persons benefits||2|
Focus group themes
Job loss experiences
Cancer survivors who were working at the time of the cancer diagnosis said they initially intended to keep working. Most cancer survivors worried about their ability to stay at work, and some cancer survivors re-scheduled working hours and reduced their workload after diagnosis. Cancer survivors reported that the main causes for loss of employment at the time were that their temporary employment contracts were not extended, that they had suffered from side effects of treatments, which disabled them for work and/or that they had failed to combine work with treatment plans. Some cancer survivors felt that their former employers did not arrange for necessary adjustments to be made to the workplace or to their workload after they were diagnosed. Most cancer survivors felt forced to stop working by their employer or by the circumstances. Cancer survivors who voluntarily stopped working, often did so following advice from their medical specialist, insurance physician and/or their social environment.
Work was described by many cancer survivors as a reliable factor that still gave them something to hold on to, while dealing with a life-threatening disease. Consequently, job loss was generally described by cancer survivors as an unexpected and radical event. Some cancer survivors had strongly requested their employer to let them stay at work. A few cancer survivors could imagine why it would be undesirable for the company to keep them employed; others perceived the employer as being ungrateful for letting them go after years of faithful service to the company.
After job loss or initially going on sick leave, some cancer survivors still received attention (e.g. phone calls, flowers) from the workplace. A couple of cancer survivors who were on sick leave, were beforehand ensured that they could return to their job after recovery. When their temporary employment contract was not renewed during sick leave, this turned out to be an empty promise. Some cancer survivors were very disappointed about that, while others were more understanding about the decision their former employer had made.
In the end, they did not renew my contract, which made me bitter. After all, despite your illness, in the beginning you do all you can to keep your standards up and to succeed despite your problems, but then it turns out not to be. (Cancer survivor, woman, age 46)
Guidance by insurance physician
Insurance physicians reported that cancer survivors, when they first visit the insurance physician, often seem to have wrongful expectations of the social security system, e.g. that cancer survivors will receive ongoing benefits because of their diagnosis. In insurance physicians' opinion, medical specialists contribute to this by giving false advice such as: ‘Do not worry about work. You will receive sickness benefits anyway’.
Some insurance physicians mentioned that they approach cancer survivors with job loss experience differently than cancer survivors with permanent employment contracts, as they perceive cancer survivors with job loss experience as (1) more vulnerable in psychological and social aspects; (2) as having more problems in coping with the disease and loss of job; and (3) as generally lower educated, compared to cancer survivors with permanent employment contracts.
Because of these differences, insurance physicians expressed a need for additional consultation time in order to provide proper guidance to cancer survivors with job loss experience. Consultations should last longer and should be planned more frequently to establish a good relationship. Nevertheless, insurance physicians did not think it to be sensible to ask the cancer survivors in detail about experienced barriers and facilitators for return to work during consultations. That is, many insurance physicians felt that, within the boundaries of the social security system, they did not have the means to offer proper support to these cancer survivors, such as scheduling consultations more frequently or the possibility to refer cancer survivors with job loss experience to a suitable return to work intervention programme.
The majority of cancer survivors experienced their insurance physician to be indifferent if the insurance physician did not ask about their history of cancer. Consequently, during consultations, some cancer survivors felt the need to explain their situation and defend themselves for not being able to work. Most cancer survivors were confused, uncertain or disappointed about the low frequency of guidance and level of support by the insurance physician. However, some cancer survivors experienced a low frequency of contact as very pleasant, as this gave them time to rest and focus on their recovery. A couple of cancer survivors were unwilling to go to appointments with the insurance physician, while others thought of it as comparable to the obligations that employees have to consult occupational physicians.
Cancer survivors who visited the same insurance physician every time, seemed more satisfied compared to those who had to visit different insurance physicians. They experienced the insurance physician to be supportive, committed and flexible in discussing their return to work planning.
At a certain point, you hear nothing more from the social security agency. That's great, and it is convenient to be left alone but, on the other hand, it also made me restless. (Cancer survivor, woman, age 53)
I think that insurance physicians allocate the same amount of time to cancer patients as they do to, say, those with a simpler physical problem, such as a broken leg. (Insurance physician, man, age 54)
Motivation for return to work and meaning of work
Most cancer survivors said they did not actively start planning return to work until their treatment had been completed. They did report to be motivated to keep the option of return to work in the back of their minds, throughout the process of diagnosis and treatment. The main motivators for returning to work according to these cancer survivors were (in random order): (1) dealing with their illness and emotions (e.g. not feeling like a patient); (2) getting out of the house and undertaking things (again); (3) getting back into a daily rhythm; (4) feeling healthier, appreciated and useful; (5) financial reasons; and (6) participating in society. According to insurance physicians, in their experience the main motivators for cancer survivors to return to work were: (1) proving work ability; (2) participating in society; (3) distraction from cancer; and (4) staying in touch with (former) colleagues.
A few cancer survivors felt there was too much emotional distance between them and the workplace after cancer. For example, they had no contact with former colleagues or employers anymore, or they felt hurt because they had to leave work due to the cancer diagnosis or treatment. As a result of the emotional distance between them and the workplace, some cancer survivors said they completely gave up thinking about work or return to work.
Working again is such a distraction and delight, because you are, once again, no longer a patient but a person. (Cancer survivor, woman, age 51)
I really longed to get back into society, staying at home made me sick, literally. (Cancer survivor, woman, age 43)
Psychosocial and cancer-related barriers and facilitators for return to work
After treatment, most cancer survivors struggled to actively put their minds to return to work. These cancer survivors said that, at the time, they struggled to cope with having faced a life-threatening disease, and also a lack of confidence in their chances of successfully returning to work, due to their job loss experiences. Insurance physicians reported that they often perceive that there is a psychosocial barrier for return to work in these cancer survivors, as cancer (temporarily) seems to cause a shift in life priorities, i.e. family and private life become more important and work becomes less important. In addition, some cancer survivors mentioned that, after treatment, they needed help to shift from negative to positive cognitions, i.e. stop thinking of what they had lost and start thinking of what they can still do. Most cancer survivors experienced finding closure after cancer to be a long and difficult process, which could pose as a barrier for return to work. Cancer survivors who were receiving support and guidance from their environment, e.g. spouse or professionals, such as their insurance physician or general physician, on how to recover and to cope, seemed more confident about (trying to) return to work.
With regard to their cancer history, several cancer survivors mentioned that their attempts to return to work were hindered by health problems as a result from treatment and diagnosis. In addition, most cancer survivors felt uncertain about their work ability after cancer, which made it hard for them to decide when and how to attempt to return to work. Some cancer survivors said they did not have enough energy to take up both housekeeping and trying to return to work simultaneously. Their return to work was sometimes facilitated by relatives taking over the cancer survivor's tasks at home, so that the cancer survivor would have enough energy to go to work.
If the weather is nice, they might think: ‘Well, I have only three months left, I'd rather go to the beach than (go to work and) pack biscuits all day’. (Insurance physician, woman, age 53)
That's what makes applying for jobs so hard; you don't know what your capabilities are. You have to be sure [and think] ‘this is a job that I can do’; but how do you know? (Cancer survivor, woman, age 51)
Work-related barriers and facilitators for return to work
Regarding return to work, most cancer survivors expressed a need to start slowly and gradually increase the number of working hours, e.g. in a subsidised job. This way, they could try working again and avoid burdening an employer with potential sickness absence. However, insurance physicians report that subsidised jobs nowadays are rare, as funding for them has been cut back over the years, which creates a barrier for cancer survivors to return to work.
Cancer survivors and insurance physicians reported that return to work is further hindered by employers' doubts about whether cancer survivors are able to meet job demands. Also, to them, employers seem to be prejudiced about the risk of recurrent cancer, i.e. employers overestimate the risk of recurrent cancer and are therefore reluctant to hire cancer survivors. Furthermore, cancer survivors must compete with a large group of ‘healthy’ persons for a job. During job interviews, most cancer survivors felt the need to be honest about their cancer history, but this often led to rejection by employers.
In general, several insurance physicians made a comparison between employed cancer survivors and cancer survivors with job loss experience, and concluded that there is a difference in their return to work situation. Insurance physicians reported that, due to doubts about work ability, reluctance from employers to hire cancer survivors, as well as a large emotional and sometimes also practical distance to the labour market, cancer survivors with job loss experience are at a disadvantage. To these insurance physicians, the most important return to work barriers for these cancer survivors, e.g. struggling to cope with cancer and job loss simultaneously, seemed related or the result of the job loss experience. Furthermore, due to job loss, cancer survivors lack the support from an employer and colleagues. Instead, they enter the social security system, which was recognised by some of the insurance physicians as a factor that complicated the return to work process. These insurance physicians thought that social security systems in general have a certain ‘tone of assessment’ to them, which contributes to a more distant and impersonal approach to return to work guidance, compared to guidance in a workplace environment.
Finally, insurance physicians mentioned that their own reluctance to discuss return to work with these cancer survivors may also create barriers for return to work. Some insurance physicians felt that it was not always morally justified to bring up return to work in conversations with cancer survivors, because of empathy and uncertainty of prognosis. A couple of cancer survivors mentioned that, although they were motivated to return to work, their insurance physician advised them not to return to work (yet). Most insurance physicians agreed that this risk-averse attitude from insurance physicians can demotivate cancer survivors in their attempt to return to work.
According to insurance physicians, high levels of motivation to return to work and satisfaction with a former job are the main facilitators for return to work. Also, a personal network of a cancer survivor can be a facilitating factor, as former employers may have a sense of good will towards the cancer survivors.
I have a lot of acquaintances whom are entrepreneurs and they say: ‘Well, if I could choose between you or a healthy person, I'd rather hire the healthy person'. (Cancer survivor, woman, age 48)
A main issue with these cancer survivors is that they get laid off because they have cancer. And that bluntness from an employer hits them hard. (Insurance physician, woman, age 49)
When an employee gets ill, there is a work environment that reacts to that by home visits, sending flowers and personal re-integration. While if you are unemployed, you have to conform to the rules of the social security agency, which has a tone of assessment to it. (Insurance physician, man, age 61)
Despite the good treatment outlooks, and the fact that these better prognoses are well known, I feel that society morally accepts that if one has cancer then this is a major problem and that one should not have to worry about work and other problems. (Insurance physician, man, age 52)
Experiences with return to work
Most cancer survivors started in voluntary jobs, which allowed them to expand their mental and physical capacities. A few cancer survivors found paid employment, sometimes with a possibility to gradually increase working hours.
Most cancer survivors enjoyed return to work, although they often felt fatigued and some were suffering from cognitive limitations. Also, the time pressure and interactions with colleagues were experienced by some as exhausting. The employers sometimes anticipated on these problems by adjusting job demands, e.g. allowing cancer survivors to work flexible hours. Some cancer survivors had thought of starting their own business, so that they could determine their own workload.
Financially, getting cancer was a setback for almost all cancer survivors. They were not able to do the same job or perform at the same level as before, which decreased their earnings. Some cancer survivors thought they could probably do a job on a higher level, but they felt they would have to sacrifice too much of their personal time and energy, in order to achieve that. Most cancer survivors were happy with the job they ended up with, although some of them felt that they would never have a completely satisfactory working life again. Cancer had taken that away from them.
The moment I started working, I felt so much better. It was as if everything had changed. (Cancer survivor, woman, age 43)
I do not dislike my job. But sometimes when I have been filing the whole day, or doing other administrative work, I do think to myself: ‘Why did this all happen to me?’ (Cancer survivor, woman, age 48)
Data saturation assessment
In order to evaluate the level of data saturation, we studied the distribution of the quotes per theme in the conducted focus groups. The results of this analysis are presented as cumulative percentages per theme in Table 4.
|1st focus group (insurance physicians)||NA||15||3||15||5||NA|
|2nd focus group (insurance physicians)||NA||38||6||31||13||NA|
|3rd focus group (insurance physicians)||NA||49||6||48||23||NA|
|4th focus group (cancer survivors)||30||66||36||74||55||36|
|5th focus group (cancer survivors)||87||93||69||90||80||69|
|6th interview (cancer survivors)||100||100||100||100||100||100|
Table 4 shows that, for the majority of the themes, a high level of saturation was reached after the fifth focus group, e.g. 93% for the theme ‘Guidance by insurance physician’ and 80–90% of the combined themes ‘Psychosocial, cancer-related and work-related barriers and facilitators for return to work’. Consequently, the contribution of the final focus groups and interview to the overall results was less extensive compared to the contributions by the focus groups, indicating a high level of data saturation for most themes.
In addition, the conclusion from the informal assessment with the researchers and moderators after the final focus group was that relatively few new results had come forward in that session. Therefore, we concluded that data saturation in this study has reached a satisfactory level.
Reflections on a Research Clerkship Abroad
The University Medical Center Groningen, Hanzeplein 1, PO Box 30.001, 9700 RB Groningen, The Netherlands
Cancer Prevention Research Training Program, Division of Cancer Prevention and Population Sciences, The University of Texas MD Anderson Cancer Center, Houston, TX USA
Bertha Eisses, Email: email@example.com.
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Medical students at the UMCG are introduced to the basic principles of medical research during the 3-year bachelor’s period. These experiences increase awareness of the importance of research and give them the competency to explore the literature and to find the gaps and limits of health science. In the 3-year master’s period, students practice these skills during a research clerkship of 26 weeks. Many opportunities are offered locally, but students can also choose to go abroad.
Personally, I wanted to go to a famous oncology research center in the world, because I want to pursue a career in oncology. I was lucky to find a supervisor who knew about The University of Texas MD Anderson Cancer Center, and I was immediately enthusiastic. A great advantage to Texas was having a family member living close to Houston. In March 2014, I had the first encounter with my supervisor at UMCG and soon after that I contacted my supervisor in Houston. In June, I started writing my proposal and organizing the required documents and could start my elective in November.
Planning a research project abroad is not easy. You need sponsorship letters from your university and from your sponsoring supervisor abroad for obtaining a visa from the consulate. I had to create an online profile on the MD Anderson website for uploading the required documents. And besides that, you need letters to apply for funding.
Every student has to select a research topic, review literature, generate data, and interpret research findings. However, in doing a research project abroad, you have to deal with a lot more. For example, you need to find a place to stay short-term, to learn about other cultures, and sometimes to speak a foreign language, which is not always easy, especially in presenting research. Also, you need to navigate public transport or buy a car. I decided to travel by bicycle, which was uncommon in Houston. Finally, if you have problems, your friends and family are not easily available to you for support.
I experienced many benefits from my international research experience at MD Anderson: attending lectures given by faculty from a top international institution and invited scientific leaders from elsewhere, being exposed to research methods from an international context, practicing how to work in a foreign language, improving my social skills, expanding my cultural awareness, growing my professional network, and learning how to cope with unexpected situations (e.g., organizing visa documents). I learned how cancer registries work, how their limitations and benefits influence the research questions asked, how to analyze data, including how to manage outliers and small numbers, and how to analyze and present research outcomes. Of course, adding this unique opportunity to my CV was a highlight.
I was fortunate to have ideal supervisors. They were available anytime, including after 5 p.m., which helps when time is short. They understood and respected my position as a student and knew the extent of their responsibilities to help me with my clerkship research project. Having knowledgeable supervisors is critical to a successful traineeship, in that they have experience managing research projects and trainee appointments or know people who can help.
Thus, in my experience, a successful research experience abroad requires skills in organization, time management, good communication, and collaboration. One must also have flexibility, perseverance, focus, ability to work from priorities, and openness to learning in order to take full advantage of the many opportunities available in a research clerkship abroad. The ability to develop these skills early in your career will help to accomplish future goals and long-term career success.
Sponsoring a Medical Student for an International Research Clerkship
William Glasser told us in 1978 that learning by teaching is far more effective than learning by lecturing. In Groningen at UMCG, we think that learning by (re)searching could be even more effective. In fact, this is the basis of problem-based learning. Students learn how to learn in the first years, building the foundation of their body of knowledge and acquiring academic skills that result in a bachelor thesis in their third year. During the master’s phase, the whole process of designing a research question, writing a proposal, performing the research, and analyzing and presenting the results should be practiced in the research clerkship. Two key competencies are most relevant: (1) critical evaluation of information and its sources and application of this knowledge appropriately to practice decisions and (2) contribution to the creation, dissemination, application, and translation of new medical knowledge and practices.
I was fortunate to connect my student, Bertha, to my colleague, Shine Chang, Ph.D., at MD Anderson. Dr. Chang and I share an interest in cancer education with many others in both the American and European Associations for Cancer Education (AACE and EACE, respectively). During the preparation of this clerkship, we had discussions about the topic and anticipated some formal hurdles to come. This was part of the learning process and tested our perseverance. Good collaboration and communication between the three of us and the educational office(r)s were essential to get approval at all levels, at both institutions.
The organizational hurdles sometimes felt more challenging than the content of the clerkship project being proposed! However, MD Anderson proved to be an excellent place for Bertha to work on her academic skills, receiving full support and coaching even when a change in the topic was necessary. In that situation, I was able to find a new content expert at UMCG to support Bertha in this stressful situation. In spite of this minor setback, her project was completed very successfully with a high grade on Bertha’s master thesis, a prize winning presentation of this process at the EACE meeting in Heidelberg, a first draft of a publication for a scientific journal, and last but not least, professional and personal growth of young medical professional.
Hosting an International Medical Student for a Research Clerkship
In hosting an international medical student for a research clerkship, I found four phases to the process: preparing for the clerkship, starting the experience, doing the work, and finishing the experience. Preparing for the clerkship involves two kinds of paperwork: first, the hosting faculty must complete all the legal and administrative processing for the research experience. Although every institution will have its unique requirements, getting through the process to appoint an international student can take considerable time, often longer than you might expect; start early. The second preparatory paperwork involved the team in a collaborative creation of a research and educational proposal for approval by Bertha’s medical school that described the planned experience for the research clerkship. To get approval for the proposal from the school before starting the clerkship requires the student to assimilate a lot of information quickly, which can be facilitated with examples of proposals, frequent videoconferencing, and trading drafts with feedback. Ideally, designing the project as a publishable manuscript or at least as an abstract that can be submitted for presentation at a scientific meeting is desirable, but not required.
In the second phase, the hosting supervisor needs to be ready to help the student get oriented and into the research project quickly. One suggestion is to use resources available at your research medical library, including tutorials on citation database searching, citation software, and other online resources that are helpful to researchers. To enrich her experience, I encouraged her to attend as many seminars as were interesting to her, to take tours of the institution, as well as other nearby facilities, and to meet and spend time with other trainees. She shadowed clinical faculty, conducted informational interviews , and participated in educational activities for trainees. These activities helped her practice and strengthen her networking skills, which are particularly useful when having a professional experience far from home. For example, we had her give a presentation about cancer trends and prevention activities in her home country early in her clerkship. Such an assignment helped her practice presentation skills as a small “stretch” assignment—finding, learning and organizing information, designing slides, practicing the presentation—on a topic that she is comfortable with—her own country. This first presentation allowed me to gauge her presentation skills early in her clerkship, which helped me know how much preparation she would need for presenting her research near the end of her clerkship.
The third phase centers on finishing the research project. As noted, unanticipated problems occur, so having alternate plans is helpful. As a hosting supervisor, having a variety of data resources available, as well as feasible research questions, is advantageous. Once the research project is launched, careful attention to a timeline with milestones is critical for getting the written report finished because the clerkship is not only brief, but goes by quickly. For this reason, writing should be started and the organization of the presentation be scheduled as early as possible, as should the celebration before the student leaves to go home. Because a medical student will have had initial exposure to research methods and statistics, I highly recommend that statistical and programming support be available to allow the student to focus on planning the research and interpreting results, not struggling to derive the results. Meetings need to be scheduled regularly as the learning stages may be accelerated, requiring more frequent discussions, albeit sometimes brief (e.g., to confirm interpretations, to decide analytic strategies).
The final phase focuses on ensuring the successful completion of the research clerkship. Time must be set aside for practicing the presentation, as well as multiple iterations of the written document. In Bertha’s case, she was required to write in both Dutch and English, which required switching between subtly different scientific formats and writing styles. As Bertha was already preparing to present her research to her colleagues at MD Anderson, it was easy to develop an abstract from the research and presentation, and given the timing of the EACE meeting, to create an educational abstract as well. Finally, not every task can be completed before the clerkship ends, so having a plan to finish components after the student leaves is important for successful completion of unfinished work. Such a plan can include specific deadlines selected with the activities and projects that she has scheduled for her return, as well as alternate plans to ensure the completion of the research.
Bertha Eisses, Email: firstname.lastname@example.org.
Jakob de Vries, Email: email@example.com.
Shine Chang, Email: gro.nosrednADM@gnahCenihS.
1. Cameron C, Collie CL, Chang S. Introducing students to cancer prevention careers through programmed summer research experiences. J Cancer Educ. 2012;27(2):233–242. doi: 10.1007/s13187-011-0297-9.[PMC free article][PubMed][Cross Ref]