Tailored support for preparing employees with cancer to return to work: Recognition and gaining new insights in an open atmosphere

2.1Design

Using a qualitative design, semi-structured interviews with healthcare professionals, i.e. social workers and reintegration professionals (N = 8) and employees with cancer (N = 14), were conducted and thematically analyzed [20]. The design was inspired by Grounded Theory (GT) using the Qualitative Analysis Guide of Leuven (QUAGOL) [21] and Realist Evaluation (RE) components (searching for contexts, mechanisms and outcomes, yet not looking for causal explanations, since our aim was not to evaluate the CWS as an intervention, but to know when and how the CWS worked) [18, 19].

2.2Ethical considerations

The medical ethical committee Brabant approved the study (NL63659.028.17 / P1756) and–because of the online interviewing –accepted an informed consent by mail, including name, date of birth and address of the participant. Anonymity of the participants was preserved in the Results section.

2.3Context

In the Netherlands, employers have a contract with an occupational health and safety service. They are obliged to support the return-to-work (RTW) for two years, in collaboration with the occupational physician [22]. Instead of paying social premiums for sickness absence benefits, employers have to provide payment (at least 70% of the income) during these years. Then, the Employee Insurance Agency (EIA) for disability benefits, will assess the employee, taking into account the efforts made by both stakeholders regarding reintegration. If both the employee and the employer have done enough to achieve RTW, disability pension will be paid by the EIA.

2.4Cancer & work support

The supportive method was tried out in several regional Dutch Occupational Health and Safety Services. Process coordinators were involved in the recruitment of participants for the study: i.e. RTW professionals (social workers and reintegration coaches) and sick-listed employees who delivered/received the support. Initially, occupational physicians informed their sick-listed employees about the existing method and employees were free to participate.

As mentioned in the introduction, the CWS included three (potential) modules. The ‘Disease coping’ module was based on the dual process model of coping [23, 24]. The ‘Skills’ module was based on the social learning theory of Bandura [25] and inoculation theory of Meichenbaum and Deffenbacher [26]; and the ‘Resource management’ module on the Self-Determination Theory by Deci & Ryan [27]. A maximum of six sessions for each module was proposed. Within every session, physical exercise was a subject. Conversations with the employer were also included. The activities in the sessions aimed to support workability and reduce fatigue and possible mental problems. The RTW professionals were trained in disease coping and skills protocols beforehand. See Fig. 1.

Fig. 1

Cancer & work support.

2.5Data collection

Process coordinators of about 18 regional National Occupational Health and Safety Services (the Dutch ArboNed) invited RTW professionals (social workers and reintegration coaches), who had been carrying out different modules of the support: ‘disease coping’, ‘skills/competences’ and/or ‘resource management’, by an informed mail. Likewise, the supported employees with cancer were invited to participate, as well as those who were still involved in a module. After a few recalls, eight professionals and fourteen employees responded and were included in the study (convenience sample). An additional call was made to inform them again about the interview and to collect personal information (e.g. age, gender, diagnosis, occupation). Then they replied with an informed consent mail. In close consultation with the participants an appointment for the interviews was made. They determined the time and the form (video call/telephone interview). See Table 1.

2.6Interviews

Due to the Covid-19 virus, we could only conduct online interviews. To protect the participants’ privacy, we used MS-Teams/ZOOM H2 Handy Recorder for interviewing/recording and Express Scribe for transcribing the interviews, in consultation with the university’s IT service. A topic guide was developed to structure the interviews with both the employees and the professionals – see Appendix. Participants were asked how they looked back at the support and what the support yielded. The topics of the interviews included the frequency and timing of the different modules of the support program, strengths/weaknesses of the support (attuned to the phase you were in) and RTW experiences (employer contact, what has it given you). For the professionals we added questions on protocols and scope for action. We started with an introductory talk and a few general questions (do you know when you started the Cancer & Work Support and which modules were offered/followed then; what did you appreciate most and why?). Then, we continued to ask questions about what was of particular interest for the person concerned. During the interviews, we asked – in case of doubt – for reflection on what was said, so that we could get as clear a picture of the experiences as possible. Participants could choose whether to receive a voucher or to donate the small sum to the Dutch Cancer Society (KWF). The first author, an experienced qualitative researcher (CT), performed and fully transcribed the interviews. The interviews lasted on average 45 minutes. After the interviews and analysis, the participants received the results of the research/interview; we did not receive any response to the findings.

2.7Analysis

Inspired by Grounded Theory, using the Qualitative Analysis Guide of Leuven (QUAGOL) [21] and Realist Evaluation components [18, 19], we tried to understand the support provided while labeling contexts, mechanisms and outcomes, yet not searching for causal connections. We used an open approach and did not use initially drawn-up theories and hypotheses, as we weren’t aiming to measure the effectiveness of the Cancer and Work Support (CWS). We focused on the (themes in the) mechanisms, as we were most interested in what exactly happened and was experienced during the sessions.

While studying the transcripts (reading with the research question in mind, as many times as necessary) and monitoring data-saturation (which might not be reachable considering the various characteristics of the participants), narrative and conceptual reports were made per interview (CT) [21]. At the same time, working mechanisms, contexts and outcomes were highlighted and coded in the transcripts by three authors independently of each other (CT, RB, MJ) [18, 19]. For all transcripts, and based on the conceptual reports, core messages and meaningful themes –derived from the contexts (about attitude, medical and work situation, environmental support), mechanisms (about communication, awareness, involvement, approach) and outcomes (return/no return after support) –were identified and listed (CT). In cooperation with the research team, these messages and themes were repeatedly and intensively discussed to be able to structure and describe the findings in a useful and logical way. Final decisions were made by consensus and in cooperation with all authors.

3.1Tailored support

At the start of the support, which was in general the disease coping module, the professionals mentioned that they really wanted to adapt to the needs of the employee. As regards timing, they experienced however that the modules did not always harmonize with the employee’s phase of recovery. Individuals also seemed to differ regarding disease coping and progress. In close consultation with the employee, workable choices were made.

Throughout the sessions, this could lead to postponed or spread-out consultations (e.g. because of additional medical therapy), to choosing appropriate exercises (e.g. reflection tasks seemed less suitable for commonsensical doers), to advice to stop the coping module, or, to refer to the next module.

The interviewed professionals themselves (i.e. social workers, reintegration coaches) experienced that the support to be given was a nice and complete method, but with a large number of time-consuming exercises for the employee shortly after cancer treatment and a lot of preparation time for the professionals.

Professionalism and experience –being able to diverge from the prepared session –was found to be important for the RTW professionals. They frequently had to adapt the tight protocol, to let go of the structure and/or improvise, in order to meet the specific needs of their client and to stay in good contact (not to lose him/her).

3.2Involvement

3.3Approach

3.4Context

Although both employees and RTW professionals very much appreciated the support received, respectively given, the experiences of the participants varied. This worker summarized the contextual factors regarding the support as follows:

3.5Value of the CWS regarding RTW

4.1Aims of the CWS

At the start, the CWS aimed to prevent the development of depression and anxiety; to enhance the confidence of patients in their return to work and to support recovery-enhancing behavior including perseverance when returning to work. The findings show indeed that professional help may be useful in reducing symptoms of depression or anxiety, by giving individuals the opportunity to talk freely and safely about their feelings and concerns. The patients were given the time needed for their return to work or to extend working time. Moreover, healthy behavior (e.g. exercising) was a topic at the end of every session. The employees mentioned that they were aware of their reduced energy levels and that they had learned to deal with it. Shaw and colleagues [29] found that physical exercise provided positive effects on wellbeing and was essential for workability. Although we know that twelve of the fourteen employees returned to work, we cannot conclude whether and how the CWS contributed to workability and/or work resumption in a meaningful way for both the employee and the employer. However, we can perhaps agree with the findings of Dorland et al. [30] that reducing symptoms of depression and fatigue and supporting workability can help improve work functioning over time.

4.2Human centered and tailored

The CWS was experienced as human centered. This concept is widely used in business [31] and has some overlap with CWS since the method is developed on the basis of understanding people’s needs and behavior. After all, the CWS was theoretically founded (e.g. on social learning theories) and based on positive experiences of the JOBS program [16] that has been applied to several different groups experiencing ‘transition in life’ such as from school to work [32], from work to work [33], from work to pension [34] and from sick leave to return to work [35]. The principle of change in this transition underlying the JOBS program is creating mastery experiences thereby enhancing self-efficacy and the ability to deal with obstacles and setbacks [17] in safe surroundings, i.e. human centered.

The RTW professionals tailored their support to the needs of the client, based on their expertise as a professional counselor. The social workers, for instance, are used to providing support in case of social problems. For the reintegration coaches the skill and resources module seemed to coincide more with their professional skills. Nevertheless, the professionals were trained beforehand in disease coping and skills protocols, during two refresher-training days. One pitfall might be that they relied on their experience while providing the CWS, meaning that they had to depart from the tight protocol to tailor the program. Did they work sufficiently according to the new method, or did they provide a form of ‘care as usual’?

However, according to the professionals, an important difference with ‘care as usual’ was that the participant employees of the study did not request assistance but were made aware of the existing new way of supporting employees with cancer by the occupational physician. In this way, CWS can be regarded as supply-driven assistance rather than demand-driven help. A second difference was that the CWS was a new and full program, including career tools (skills, resources) as well.

4.3Involvement and approach

If we look at the way in which the RTW professionals were involved in the CWS, we think we see a comparison with the concept of ‘attentiveness’ (in elderly care) from Klaver and Baart [36] and the concept of ‘concernful involvement’ from Yanchar [37]. ‘Attentiveness’ can create a space in which good relationships may arise. This concept stems from the Theory of Presence (ToP) [38], which was developed in the Netherlands in 2011. Healthcare professionals, especially in the fields of hospital and elderly care, should have learned since then how to be ‘present’, and how to connect to the needs of patients. Acknowledgment and being open in a professional caring relationship seem to be needed to ‘being there for someone’, in order to give people the opportunity to show themselves and let them feel they are seen [39]. ‘Concernful involvement’ refers to the recognition that both parties (employees and professionals) are involved in making sense of a world “in which people, objects and events matter” [p.4 in 40]. It is about giving meaning and reflection. Based on our findings, we believe that a good mutual relationship in a trusted open atmosphere may contribute to a better reception of support. Leslie et al. [41] found that a trusting relationship promotes engagement and better collaboration in healthcare settings.

With regard to the open atmosphere during CWS, Haugli and colleagues [42] confirmed that being seen, heard and taken seriously by ‘work and health’ professionals is one of the most valued elements of the RTW process. Moreover, people on long-term sick leave perceive awareness and resources, as well as employer support, to be valuable [42]. We found that the support provided created increased awareness. The employees were given a chance to reflect on their feelings, decisions and actions in an attentive and safe environment. Moreover, they learned how to manage their concerns, which helped them to regain their self-confidence. Together with employer understanding and recognition of their vulnerability, which can be increased or decreased in the workplace [8], this was felt to be an important step forward in preparing their RTW.

The results showed that the providers’ professionalism during the CWS program was highly appreciated by the employees. Which indicates that satisfactory RTW support after cancer cannot be provided by just anyone. Professional competences are important in developing trust [43].

While mentally preparing for RTW, cancer survivors may feel insecure and vulnerable. Many of their inner thoughts and considerations can only and should therefore only be discussed in a safe environment [8]. Similarly, MacLennan et al. [40] pointed out the urgency of receiving support from healthcare professionals. In their study, they found that women with breast cancer are making decisions about workability; they rethink the meaning of work and are in need of professional advice [40]. We do not know whether these findings can be directly generalized to all cancer types, but adequate communication skills and a good relationship seem to be of great importance.

4.4Communication with the workplace

The three-way discussions were held to stay in good contact with the employer and discuss possible RTW options, if desirable. These discussions during sickness-absence have proved to be helpful [44]. In a study among employers, communication with absent employees was found to be crucial. Different communication styles were needed during the consecutive stages in the RTW process: from the moment of disclosure, during sickness absence, RTW planning, until the actual return [14]. Recently, Yagil and Cohen [45] suggested the need for guidelines and training programs to support contact and communication in the workplace during absence from work. The participants in the current study talked about the value of the CWS with regard to communication with the workplace. Although we know that good contact with employers can lead to better RTW experiences [46], the research team did not (have the possibility to) ask the employers directly. However, the findings show that the employers assumed their role in the RTW process and most of them were supportive and understanding. During the CWS, the RTW professionals were able to further inform them regarding their concerns and needs, which was very much appreciated.

4.5Strengths and limitations

Based on the interviews with 22 participants, who were very open during the conversations, we saw that the CWS was highly appreciated by professionals and employees. While focusing on what happened during the sessions, we were able to discover the two characteristics of the CWS. The interviews that were rich in content showed us the challenges the participants (employees and professionals) face, each with regard to their own concerns and in their own way. We mainly focused on the employees’ concerns and challenges. The experiences of both employees and professionals were brought together in the results section, to show that both perspectives underline the findings. This way of describing promotes readability and contributes to the trustworthiness and theoretical generalizability of the findings. Together, eight professionals supported about 40 employees with cancer during the CWS. Thus, the global experiences of more than the 14 employees were discussed. Our sample of employees included a variety of age, cancer types and functions. The professionals also varied in age and experience. However, a limitation might be that we could not compare the different experiences of employees of different ages (the majority between 40 and 60 years; only two < 40) or cancer types (50% breast cancer); nor did we examine employees’ medical conditions, cancer severity, and type of treatment.

Knowing that the study was based on a convenience sample, after six interviews with professionals, we additionally searched for two younger and less experienced social workers. We do not know why professionals and/or employees did not respond to the coordinators’ call to participate in the study. We can only assume it might have something to do with workload (professionals) or with a hesitation to talk about cancer again (survivors). Twelve of the 14 employees had earlier returned to work. Perhaps some of the other supported employees preferred to close the uncomfortable cancer episode and just be thankful that they were able to live a ‘normal’ life again [47].

Furthermore, recall bias may have occurred as for some participants, the CWS support was provided three years ago. Concerns about memory are often reported by cancer survivors [48]. The employees did not necessarily follow all three modules, nor did the professionals deliver them. For that reason, no precise statements can be made about the original aims of the CWS. Nevertheless, we discussed some issues regarding feelings, concerns and work resumption. Two types of professionals delivered the CWS: (occupational) social workers and reintegration coaches from two different providers. This might have led to a somewhat different way of working. The disease coping module seemed more familiar to the social worker, whereas the reintegration coaches were more at home with the skills and resources modules. To reduce the differences regarding the coping and skills modules, two-day training sessions were provided.

4.6What this study adds

In the Netherlands, employees and employers have to collaborate during sickness absence and draw up a reintegration plan in collaboration with the occupational physician. With the CWS, employees with cancer are closely supported after treatment. They are supported in accepting their situation gradually and in shaping their new (working) life little by little. In-depth conversations are possible, about more than just work. Not feeling pushed to RTW, skills and competences will be looked at more closely. In the last module, if applicable, resources are mapped. Awareness is thus created.

An important finding is that the way the participants are involved: the open connection and the attention received, can be seen as a condition for being open to the substantive support to be provided. Contact is maintained with the employer and, if the situation allows, he or she is involved in (preparing) the usually gradual return. What provides peace of mind is that employees are given time to recover and at the same time think about (and prepare) their return at a later stage. Without CWS, employees are alone with their concerns and might then feel pushed to return to work (e.g. in the case of an employer who is not understanding) and feel more dependent on employers’ concerns and wishes.