Abstract
BACKGROUND:
This qualitative study followed participants enrolled in a return to work (RTW) intervention, aiming to address individual physical, psychological and work-related challenges.
OBJECTIVE:
To explore cancer survivors’ experiences of receiving a tailored RTW intervention initiated parallel with chemotherapy and/or radiotherapy.
METHODS:
Two semi-structured interviews of eight female cancer survivors in treatment for breast cancer (n = 7) or ovaria cancer (n = 1) were conducted prior or close to their RTW and 3–5 months later. Inspired by Margrit Schreier’s inductive analysis coding and identification of themes guided the analysis.
RESULTS:
Participants expressed satisfaction with the RTW intervention, which helped them to cope during the RTW process. Three themes with corresponding subthemes dominated the participants’ experience of the RTW intervention. 1) Social workers made participants feel individually coached, 2) Collaboration with social workers helped over time to manage RTW, and 3) Social workers supported participants to conduct and adjust the RTW plan.
CONCLUSION:
This study shows how the interaction with social workers were based on mutual trust and sense of being cared for, which seems to have a positive impact on how participants managed their RTW. Future research needs to address the long-term challenges in cancer survivors' RTW.
Introduction
Cancer survivors emphasise the importance of work participation, also during the acute phases of treatment [1, 2]. A wide range of studies have shown that cancer survivors are able to work and return to work (RTW) during and after cancer treatment [3–5]. The ability to work while undergoing cancer treatment is influenced by - available healthcare resources, access to occupational physicians, suitable rehabilitation services and support [1, 6]. Barriers to involvement in the RTW process among health care professionals has been seen e.g. lack of time, knowledge, skills, and negative professional attitudes [7].
Patients returning to work post cancer treatment experience a variety of challenges that increase the risk of recurrent sickness absence and permanent exclusion from the labour market [8, 9]. Factors which predict a less successful RTW are numerous, including socio-demographic factors (age and education), work-related factors (physical work demands), non-supportive work environment, no possibility for flexible work arrangements and reduced work hours, fear of unemployment, disease-related factors depending on the cancer type and treatment-related factors (chemotherapy, surgery or endocrine therapy), and lack of advice from a physician regarding work issues [10, 11].
Studies have identified both individual and environmental factors that influence the RTW process [11–15]. Prevention of work disability after cancer treatment is dependent not only on the individual, but also on the possibility for job modifications, e.g., fewer hours, adjustment in work tasks and the possibility to talk openly about the illness [1, 6]. Provision and access to rehabilitation services differ among countries. Occupational interventions, medical, physical, psycho-educational and multidisciplinary, are provided by the social sector and or the healthcare sector and differ accordingly. Only multidisciplinary intervention studies have shown positive effects regarding RTW; however, such studies are sparse in number and with modest effect sizes [10, 17]. Early onset of a RTW intervention while undergoing cancer treatment may hamper work resumption if physical and psychological side effects [6] and work-related challenges [18] are not addressed.
To address these challenges, an individual tailored RTW intervention was implemented in two Danish municipalities. The RTW intervention was based on Acceptance and Commitment Therapy (ACT) [19] and Individual Placement Support (IPS) [20], respectively and was offered by two social workers employed in two municipal job centres. Usually the job centres, provide only a few or no consultancies to cancer survivors during the period of sickness absence. The intervention study [21], aimed to address this practice and addressed cancer survivors’ individual physical, psychological and work-related challenges while they were still undergoing cancer treatment. The RTW intervention consisted of individual meetings and preparation of an individual RTW plan to increase cancer survivor’s readiness for RTW. In this study, we aimed to explore how cancer survivors experienced the RTW intervention and its possible benefits.
The objective of this qualitative study was to explore cancer survivors’ experiences of receiving a tailored RTW intervention initiated parallel with chemo- and/or radiotherapy.
Methods
A qualitative study design was applied with the use of semi-structured individual interview of cancer survivors enrolled in a RTW intervention exploring how the intervention was experienced.
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.
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.
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?’
Interview guides
Interview guides
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.
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.
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.
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.
Results
Eight women receiving the RTW intervention and at the same time in treatment for breast cancer (n = 7) or ovaria cancer (n = 1) were included. The age of the women varied from 23 to 57 years, and the participants represent different professions in the private and the public sectors (Table 2).
Characteristics of included participants
Characteristics of included participants
The overall experience of the RTW intervention was emphasised by participants as very positive due to the support they had received from social workers in particular. In the participant's perspective, the social workers were the intervention as they helped them conduct a plan for gradual RTW and supported them during the entire process. Participants emphasised how social workers from the first contact have had a great impact on how they managed their RTW process while receiving treatment. Three main themes with corresponding subthemes dominated the participants’ experiences of the RTW intervention: Theme 1: Social workers made participants feel individually coached, Theme 2: Collaboration with social workers helped over time participants manage to cope with the RTW process, and Theme 3: Support from social workers supported participants to carry out the RTW plan (Table 3).
Identified themes
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.
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.
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”.
Discussion
The findings showed an overall satisfaction with the RTW intervention provided by social workers. The enrolled participants felt individually coached during the RTW process. The participants reported having a personal and close relationship with the social workers during their RTW process. The overall perception was an experience of a holistic needs assessment taking their individual challenges and needs into account and supported them to manage the RTW process. These experiences corresponded to the ideals in the ACT [19] and the IPS [20] on which the RTW intervention was based: namely, addressing individual challenges and needs and making tailored RTW plans by motivational communication with the participants and reaching mutual agreements between participants, employer, and social workers about the RTW plan. Moreover, starting work with reduced hours and modified job tasks was a means to reach the aim of the RTW as well as to deal with experienced imbalances between job demands and participants’ work ability. The reported positive relationship with social workers shows how the intended benefits from the RTW intervention seems to be achieved. Although we aimed for variation in RTW experiences, it seems that only positive responses were reported. The recruitment strategy where social workers were recruiting participants for the study might have resulted in positive responses from participants. This procedure for recruitment might have overlooked the perspectives from people, which did not gain any or less benefits from participating in the intervention.
Physical and mental distress was commonly reported as affecting work ability and work-life balance. According to the principles in the IPS, the social workers enabled ongoing modifications before RTW and during the RTW process. Thus, the jobs of some participants were modified, making it possible for them to work despite the side effects of anti-cancer treatment. However, the need for recovery was not always possible to accommodate. Therefore, sick listing and vacation were strategies used by participants periodically to balance job demands. Although these periods seemed necessary during the initial RTW for some participants, the RTW process was not disrupted. After a short break from work, participants gradually returned, supported by the social workers.
Even though commitment is a key element in the ACT on how avoidant behaviour towards RTW may be dealt with [19]. The participants in our study solely reported how social workers addressed their individual needs. The participants had to commit themselves to RTW activities, as they were otherwise not entitled to sickness benefit. However, the social workers payed special attention to the participants’ needs and work ability. The participants did not feel pushed or forced to RTW.
Our findings are in line with those in the study by Barnard et al., 2016, in which cancer survivors’ coping and adjustment responses changed and evolved throughout the RTW process, they reported how participants’ coping behaviour during the RTW process could regress from periods with staple and good coping to periods of rebuilding [29]. In the present study, the participants took short breaks from work when job demands became too high. ‘Taking a break’ may be characterised as a regression in coping level from an employer’s perspective, but from a social worker’s perspective such behaviour could be viewed as coping, if the break was short and in agreement with the RTW plan. The participants in our study felt acceptance and support from the social workers, which may have fuelled the participants’ engagement and commitment to RTW further, thus consolidating their coping.
The physical, psychological, and work-related challenges cancer survivors reported during the initial RTW process are also in line with previous studies [4, 30–32]. Due to the timing of the intervention, the participants were in an in-between position: not fully recovered and yet not fully reintegrated into the workplace. The RTW intervention aimed to address health-, personal- and work-related issues and to give individual support accordingly. However, following the initial RTW with reduced work hours and modified job tasks, the economic compensation provided to the employer ended. This may point towards a need for continued or prolonged supportive systems available at the workplace level if cancer survivors wish to start work before they are fully recovered, as work modifications may be needed for a longer period of time [33]. The job demands at the participants’ workplaces included interaction with customers, patients, children and colleagues. Thus, withdrawal from duties if needed or taking a break or just spending some time on their own was difficult because interaction was a core element in these types of jobs. The social workers acted as intermediaries between the employer and the employee. The IPS ‘place-and-train’ approach has been found to be an effective RTW strategy [20, 26], allowing the identification of the actual obstacles while at the work place, and providing realistic solutions in the particular work setting during the RTW process. Although, the IPS has been studied mainly in employees with non-cancer conditions, particularly mental illness [34], the transferability to female cancer survivors with breast cancer has shown to be promising [9].
In contrast to normal practice in Denmark, the RTW intervention study was initiated parallel with cancer treatment and tailored to address the challenges in early RTW. Coping during and after treatment is also influenced by environmental factors such as the available resources in the healthcare system, e.g. access to rehabilitation services [1]. The support offered by the social workers may have empowered the participants to cope with side effects caused by the cancer and treatment. Albeit the social workers were aware of this and encouraged participants to consult health services if needed. The intervention strived to bridge the gaps between the sectors the participants were transferred to. The transition from the municipal-provided occupational rehabilitation to the workplace may have lacked support from health professionals, particularly after the social workers’ intervention ended. Knott et al. highlighted the lack of a standard and integrated approach to the RTW rehabilitation process that incorporates a coordinated bio-psycho-social approach to cancer rehabilitation [31]. Our results emphasised the importance of the supportive relationship with the social workers, and in line with previous qualitative studies, the IPS seems to strengthen the relationships between users and providers [35]. A review of qualitative studies concluded that cancer survivors experience challenges regarding maintaining employment, which may require coordinated support from health and occupational professionals [36].
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].
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.
Conclusion
The aim in the present study was to explore cancer survivors’ experiences of a tailored RTW intervention initiated parallel with chemotherapy and/or radiotherapy. The RTW intervention offered in two municipal job centres was initiated earlier than usual practice in a Danish context. The themes identified were: 1) Social workers made participants feel individually coached, 2) Collaboration with social workers helped to manage RTW, and 3) Social workers supported participants to conduct and adjust the RTW plan. The findings highlight that an early tailored RTW intervention was well received by the enrolled participants, and they felt supported by social workers to RTW during cancer treatment. The interaction with social workers based on mutual trust and a sense of being cared for, which had a positive impact on how RTW was managed by the female cancer survivors. Transferability to other cancer survivors must be further explored, considering both the individual challenges, the type of work and the RTW legislations.
Author contributions
All authors took part in designing the study, discussing the results and writing the entire manuscript. The first author independently carried out data collection and analysis.
Ethical approval
All procedures involving participants were in accordance with the ethical standards of the 1964 Declaration of Helsinki and National Ethical Standards. The study was done according to Danish standards registered with the Danish Data Protection Agency (number 1.16-02-657-14).
Informed consent
Participants were informed about the aim of the study and provided written informed consent prior to completion of the first interview. Participants’ identities were protected in accordance with the European Data Projection Law by using a coding system for names, addresses and telephone numbers which were deleted accordingly.
Conflict of interest
The authors declare that they have no conflict of interest.
Footnotes
Acknowledgments
The authors are grateful for obtaining access to explore the participating cancer survivors’ perspectives and for the opportunity to carry out the interviews and observations.
Funding
The study was funded by The Danish Cancer Society (R-73-A4736), Central Denmark Region (ID number 1-31-72-6-13) and The Danish Health Foundation (ID number 2014B056). The funding partners had no impact on the design of the study or the presented findings.
