Return-to-work intervention while undergoing cancer treatment: Female cancer survivors’ experiences

2.1 Inclusion criterion

Participants enrolled in the RTW intervention study [21] who had attended a minimum of three meetings with the social worker. There was no maximum number of meetings set for exclusion.

2.2 Sampling and recruitment of participants

A purposive sampling strategy was applied, outlining criteria for choosing participants and work sites to be observed [22]. Variation in relation to gender, job types and age was aimed for from the beginning of the recruitment process. The two social workers providing the RTW intervention made the first contact to eligible participants. Social workers informed them about the aim of the study and asked them to participate. If they agreed, they were asked to provide their phone numbers and were contacted by the interviewer (the first author). Of 20 eligible participants enrolled in the RTW intervention, nine women were recruited and gave their consent to participate in interviews. Although, we aimed for gender variation, none of the participants recruited were males. One of the participants withdrew prior to the first interview, resulting in eight included participants.

2.3 Data collection

To gain information on the individual RTW processes, two interviews within a time span of 3 to 5 months between interviews were conducted with each of the recruited participants. The focus was to explore the early stages of the RTW process, i.e. how and if the tailored RTW plans addressed the participants’ physical, psychological and work-related challenges and also how they experienced following the RTW plan. The first interviews were carried out from September 2015 to June 2016, and the second interviews from December 2015 to December 2016. A semi-structured interview guide was used, with questions about the participants’ individual experiences of the RTW intervention (Table 1). Prior to the second interviews, participant observations including informal conversations with participants, co-workers at the workplace and the immediate supervisor were performed. Field notes about the workplace, actors and activities were taken during the participant observations in accordance with James Spradley’s understanding of social situations [23]. Field notes were used to understand the work settings and to help formulate interview questions for the second interview. Follow-up questions were used in both interviews, e.g., ‘Can you tell me more about ⋯  ’; ‘You mentioned  ⋯   will you elaborate on ⋯  ’; ‘I would like to understand how it has been to ⋯   can you tell me more’; ‘What did you think about  ⋯  ’. During the second interviews, questions involving information from the first interviews were used: ‘At the last interview you mentioned ⋯  ’, ‘How does it feel to be back at work now?’ and ‘Can you tell me how you have been since our last interview?’ ‘Do you experience any challenges in managing your work tasks?’

In Denmark, occupational rehabilitation while undergoing cancer treatment is not a standard procedure in hospitals or municipalities [24]. The Sickness Benefit Act of 2014 constitutes the structural framework for people on sick leave. According to this act, during the first 30 days of sick leave the employer is responsible for paying the salary of the sick-listed employee. If the sick leave lasts more than 30 days, the employer is entitled to get wages partially reimbursed by the state until the employee returns to normal work hours, or the employment contract or the benefit period ends or cannot be prolonged. Furthermore, if an employee’s sick leave exceeds 8 weeks, he/she has to attend regular meetings with a social worker at a municipal social security office [25]. The Benefit Act from 2014 also reduced the time period for sickness benefit payments from 52 weeks in the former Benefit Act to 26 weeks. Thus, the available time for making tailored RTW plans was reduced in general and in particular for cancer survivors because they were often exempted from follow-up meetings with social workers. Prolongation of the sickness benefit period was possible under certain circumstances e.g., ongoing cancer treatment or poor prognosis.

2.5 The RTW intervention

The RTW intervention was individually tailored to balance the needs, resources and readiness for RTW of the enrolled participants. Another key element was the timing of the intervention, which was initiated earlier than the usual practice in XX. Participants in the intervention study received the RTW intervention for a maximum of 1 year [21]. Patients enrolled in the RTW intervention study were diagnosed with cancer, 18–60 years of age and in permanent or temporary employment. Their treating physician also had to agree that their participation was ethically justifiable. Two social workers at two municipal job centres delivered the individual tailored RTW intervention in accordance with the study protocol [21] and were trained and supervised to follow the core principles in the Acceptance and Commitment Therapy (ACT) [19] and those in the Individual Placement and Support model (IPS) [20]. The core principles followed were communication and motivation skills from the ACT, and individual tailoring e.g., gradual RTW from the IPS.

2.6 Data analysis

The interviews were audiotaped and then transcribed verbatim, with names and places anonymised. An inductive and data-driven approach to the analysis was adopted, inspired by Margrit Schreier’s approach to content analysis involving two analytic steps [27, 28]. Step 1: Open coding of each interview until a comprehensive understanding of the participants enrolled in the RTW intervention was obtained. Step 2: Identification of themes from the first and second interviews derived from the coded interviews. The first and second interviews were coded separately, and preliminary themes identified. The preliminary themes and subthemes across the two interviews were then summarised in order to capture the essential themes on how each participant experienced the RTW intervention prior to and during their RTW process emphasising the most important aspects. Each individual interview was coded and essential themes across the entire data material condensates into three main themes with corresponding subthemes illustrating the most important issues raised byparticipants.

2.7 Compliance with ethical standards

All procedures involving participants were in accordance with the ethical standards of the 1964 Helsinki Declaration and National Ethical Standards and registered with The Danish Cancer Society (R-73-A4736). In addition, registered in Central Denmark Region (ID number 1-31-72-6-13) and The Danish Health Foundation (ID number 2014B056). Participants were informed about the aim of the study and gave their written informed consent prior to completion of the first interview. Participant's identities were protected in accordance with The European Data Projection Law, using a coding system for names, addresses and telephone numbers and deleted accordingly.

The women described how they had experienced a personal and supportive relationship with social workers from day one, making them feel in safe hands. They felt relieved to know they did not have to hurry back to work unless they felt ready: “ ⋯   she (the social worker) calls me once every 4 weeks ⋯  she says I am not to be pushed back to work”. Some stated that they felt pressure from the employer who asked them about when they could return and be able to start to work full time again. The participants discussed this pressure with the social worker, and together they tried to find a solution by involving the employer in a round table meeting. As the relationship with social workers evolved the participants felt that social workers were someone who coached them when they felt challenged. Participants described the social workers as: “someone who takes care of me’ and ‘who is always on my side”. The social worker was experienced as someone they could trust and talk to about their struggles regarding the RTW, e.g., how to manage treatment and how they could manage work while undergoing cancer treatment. The participants felt confident about telling the social workers about their personal thoughts without being forced back to work before they felt ready for it. One participant expressed: “ ⋯  actually it was very good to hear there was no hurry and I spoke to her (the social worker) and this was a very pleasant conversation  ⋯  when I went home I thought I am in safe hands, I could feel they really wanted to support me and this would be nice and easy with the necessary support”. The social worker informed them about the legal possibilities for a gradual RTW, which made them feel secure about their RTW process. In the participants’ perspective, the social workers were always aware of their individual challenges and needs before any suggestions about a RTW were made: “ ⋯  when I started, she contacted me often?  ⋯  asked me how I am doing, the first week after chemotherapy I can’t go to work – the next week is a lot worse ⋯  the third week is fantastic so I can start working  ⋯  somehow, I feel as an outsider. You are sick listed, but you also would like to go to work – but you just don’t have the energy”. The participants described how they worked on and off during their treatment and how the social workers always helped balancing how many hours they were able to work with their ability to work and provided the right amount of coaching towards resuming work and/or increasing workhours.

3.2 Theme 2: Collaboration with social workers helped participants manage RTW

The women felt inspired by the social worker to talk about their individual thoughts and challenges about going to work while undergoing treatment. Despite the reported side effects of cancer treatment, the women stated that they would like to continue to work if flexibility was possible regarding their individual work schedules. They felt this flexibility were obtained, as the social workers actively helped make adjustments in work hours and work tasks. All participants experienced a lack of energy as a side effect of treatment, which affected their work life as well as their private life: “ ⋯  it has been all about work and sleep; I did not have much energy when I finished work and got home”. Both physical and mental distress was experienced by participants as having an impact on their ability to work and to manage their private lives with family and friends. ” ⋯  the worst was mentally. I made arrangements with a psychologist; I start next week ⋯  If I should be the kind of person I used to be I would have been back to work by now ⋯  The social worker says: if you feel like this you should not start working yet. It is a good feeling not to be pushed back to work ⋯  you feel scared and physically you are not strong either”. The experienced side effects of the treatment made it necessary to make job modifications as using their vacation days to help recover does not work as a coping strategy in the long run. The social workers provided support so they could be able to gradually start working again. The social workers were also aware of the participants’ need for health services, e.g. meetings with a psychologist. The social workers encouraged the participants to make arrangements with relevant health professionals if needed. A participant explained that she received support from the social worker: “ ⋯  she was right about this with my head, my head had to keep up too  ⋯   I really needed someone to talk with and talk it all over, and I think just being able to talk openly with someone would be beneficial for me. I think I have tried to hide it”. The developed mutual trust, which had evolved over time, between the included participants and social workers was based on the social worker’s awareness of the participants’ individual needs; they encouraged the participants to talk about their mental state and their individual reactions on being diagnosed with cancer and their thoughts about their RTW.

3.3 Theme 3: Support from social workers supported participants to carry out the RTW plan

The women experienced the support provided by the social workers helped them over time in planning a suitable RTW and in putting the plan into practice. The type of support provided by social workers took place at roundtable meetings at the workplace where employer, employee and social worker participated. The meetings with the employer helped to carry out the RTW plan and to implement the plan into the current work setting: ”It went like this: We should all three find the solution which is best for you. My boss had the attitude that when the social worker comes, we were to make a plan. My boss told the social worker it is a small business so it can be difficult, it is a lot easier for bigger businesses to make arrangements”. Hence the social workers were actively involved in not only the planning but also in negotiating suitable job modifications with the employer, which made it possible to implement the RTW plan. As one of the women expressed: “ ⋯   I started up with a few hours, two hours a day, then more  ⋯   now I have five hours a day”. Some job modifications were solely arranged by the individual employee in collaboration with the employer. The social worker told them how the employer could get economical compensation for less work hours: “It has been great as she (the social worker) informed me of the possibilities of less work hours”. Information to employers about relevant legislations was also provided by the social worker in order to facilitate the RTW plan e.g., the legislative possibilities for having a trainee period with fewer work hours and less demanding work tasks and at the same time receiving economic compensation from the state. Information targeting the employer on how to get economic compensation fuelled the needed job modifications. The participants felt also encouraged to talk to their employer about the needed job modifications. This empowered participants to initiate a talk with the employer: “She (the social worker) explained how I should talk with my boss about the possibility of working as a trainee at my workplace and how such an arrangement could be made”.

4.1 Implications

Future studies are needed to investigate the individual needs for support, and ensure the workplaces are prepared to provide the necessary support during RTW [33]. We have not identified studies examining cancer survivors’ experiences with early RTW interventions although studies have identified experiences encountered by women with cancer when RTW [34]. Prevention of work disability depends not only on the individual’s coping capacity or the cancer type but also on the work conditions and possibilities for job modification such as less demanding work hours and tasks [38–41]. The study resulted in positive effect on RTW for women in treatment for breast cancer only [37], indicating that the cancer type has an impact on RTW. The controlled intervention study in which the included participants in this qualitative study took part shows that the RTW intervention had some effect on women in treatment for breast cancer compared to other cancer patients [21].

4.2 Strengths and limitations

Strength of the study was the possibility to identify themes based on data from two individual interviews carried out over time and combined with participant observations at the participants’ individual workplaces during the initial RTW phase while participants were still in dialogue with the social workers providing the RTW intervention. Furthermore, performing two interviews during the RTW process gave insight into the lived experiences of the early RTW process supported by social workers as part of this particular RTW intervention while receiving cancer treatment. The recruitment strategy involving social workers to establish the first contacts with eligible participants may have been a strength as the personal contact had a great impact on the willingness to take part in interviews. On the other hand, this recruitment strategy may have overlooked the perspective of people that could have had a more negative view on the intervention. Therefore, the participant‘s positive experiences of the intervention may be understood because of a positive interaction with social workers.

The inductive approach to the analysis [27, 28], helped identify and bring forward the participant’s lived experiences. A limitation of the study is that women, mainly in treatment for breast cancer out of the 20 people with different cancer types enrolled in the intervention gave their consent to participate. None of the males enrolled in the intervention signed up for interviews, and only eight women were recruited for interviews. Thus, the sample may affect the transferability to males and other settings. The Danish welfare system that offers possibilities for gradual RTW in this study may also have an impact on the RTW process which limits transferability to other national settings.