“After all, I have to think for myself”: A qualitative study into the perspectives of clients on shared decision-making as a method to support return to work.

Background: Work participation is an important determinant of public health; being unemployed leads to a decline in an individual’s health. In the Netherlands, unemployed people can apply for a disability benet and receive support from reintegration professionals to return to work (RTW). Since RTW has a signicant impact on a client’s life, clients should be involved in the decision-making process of RTW. A method to include the perspectives of both the clients and the professionals in the decision-making process, is shared decision-making (SDM). We explore how clients experience the SDM steps and to what extent they prefer it in their current and in their ideal interaction with professionals. Methods: We performed semi-structured interviews with fourteen clients receiving support in their RTW process from four different municipalities. Results: Clients emphasised the importance of being treated well, meaning: to be treated with respect, to be treated as equals, that professionals take a committed and personal approach, and trust their clients. None of the clients reported discussing a shared goal with a professional, or having been told that they could be part of the decision-making process. Most clients expressed that choice options have been presented either by professionals or by the clients themselves. When choice options were discussed, only the negative aspects of choice options were explained by the professional, such as legal restrictions or being told that the option was not suitable for the client according to the professional. A great number of clients experienced that shared decisions were made thanks to efforts made by both the client and the professional in equal measure. Other clients indicated that decisions were made for them. Conclusions: This study underlines the importance of how clients are treated and how this affects their RTW experience. Clients generally wish to cooperate and participate in the decision-making process, but their ability to do so is limited. Clients lack information, they do not know that they can participate in the decision-making process, and have different views on goals and choice options. This limits a client’s self-management in the RTW process.


Background
Worldwide, many people are faced with a work disability [1-3], which has a negative impact on an individual's work participation and could lead to unemployment [4][5]. Perceived barriers in work, not being able to work to the desired extent, and/or unemployment negatively impacts an individual's health and as a result public health as well, because work offers structure, social contacts, a sense of belonging and the feeling of being part of society, which highly contributes to an individual's health [6][7][8].
In the Netherlands, unemployed individuals can apply for a disability bene t in their municipality. Reintegration professionals working in the work and income domain must rst check and approve the issuance of this disability bene t ('legal aspect'). But since work is of value [6] and highly contributes to an individual's health [7][8][9], focus also lies on supporting these individuals in a return to work (RTW) according to their abilities. This support in a RTW is referred to as 'goal-oriented' and is also given by professionals working in municipalities [10,11]. Per municipality these tasks of checking and approving the disability bene t, and subsequently supporting the client in RTW, are either performed by a single reintegration professional, or deliberately distributed among multiple reintegration professionals [12].
In supporting clients to RTW, these professionals discuss barriers to RTW and make decisions on which actions can be deployed to overcome these barriers [13]. Since these decisions and actions strongly affect and in uence a client's life, it is preferable for clients to feel actively involved in the process. It increases their sense of autonomy, competence and relatedness to the agreed-upon decisions and actions [12,14], as well as their chances of a RTW.
Although professionals strive to include clients in the RTW process, studies show that despite the efforts made through methods such as supported employment [15] or motivational interviewing [16], not all focus lies on a client's needs [17]. This, while according to evidence-based practice (EBP), next to including knowledge and experiences of the professionals and scienti c knowledge, including the experiences and needs of clients in in the support of clients is essential [12].
One method to increase the inclusion of a client's perspective and stimulate feelings of autonomy, competence and relatedness to the agreed-upon decisions and actions [14] is shared-decision-making (SDM), a method developed in the curative sector [18]. The premise of SDM is that both parties have unique and valuable information to make a shared decision regarding a treatment plan. In the curative sector's case, the physician has evidence-and experience-based knowledge of treatments, while the patient has knowledge of his or her own personal situation and preferences [18][19]. SDM contains the phases 'team talk', 'option talk' and 'decision talk': team talk involves cooperating as a team, informing the client that he or she can be part of the decision-making process, and discussing a shared goal. In option talk, various choice options are presented and the pros and cons of each option are discussed. Finally, in decision talk, a shared decision is made [18].
The use of SDM in the curative sector positively affects the physician and patient alliance which has led to higher levels of autonomy in patients and a higher compliance with the formulated treatment plan [20]. This is also highly relevant in the work and income domain, since the agreed-upon decisions and actions strongly in uence a client's life; furthermore, a stronger say in making those decisions can be a positive in uence on compliance with the formulated action plan, resulting in a RTW [14].
SDM is not currently used in the work and income domain, but could potentially have added value in supporting clients to RTW. The work and income domain also includes a professional and a client, each with their own unique knowledge, experiences and preferences, various choice options and decisions which need to be made in order to achieve a mutual goal and a shared plan of action. Therefore, in this article we explore (a) to what extent clients experience that they can take part in the decision-making process, that is the SDM phases, and (b) to what extent clients want to experience these SDM phases in an ideal interaction with reintegration professionals.

Methods
We performed semi-structured interviews with clients receiving a disability bene t from a municipality. Items of the consolidated criteria for reported qualitative research (COREQ) [21] were used to improve the design and quality of reporting qualitative research (see Supplementary Material). The Medical Ethics Committee from the Netherlands Organisation for Applied Scienti c Research TNO determined that no ethical approval was required for this study.

Participants
To recruit clients, we reached out to professionals we had previously interviewed on this topic [22], and asked them to hand out information lea ets to their clients, including study information and contact information of the rst researcher (MV). We did this to ensure that we had the same variation in municipalities and clients as the article reporting on the professionals experiences [22], since municipalities differ in their approach to RTW. We included two municipalities in which clients are supported by a single professional, and two municipalities in which the legal aspect (i.e., if a client is entitled to receive a disability bene t) and the counselling to RTW is shared by two professionals. Municipalities also determine the estimated time of RTW of a client; we made sure that we included clients with different estimated times to RTW, ranging from an estimated time of two years to become 'work-t' and clients judged to be able to RTW right away.

Data collection
The semi-structured interviews (see Supplementary Material) were conducted from February to December 2019, either at a location of the client's choosing or at the municipality. The interviews had an average duration of an hour and were conducted by experienced researchers (MV, PhD, rst author and HV, MSc, third author) working in the occupational health eld. Participants were informed that all information obtained prior or during the study would be handled con dentially, and that an audio recording would be made. Prior to the interview, all participants were asked to provide verbal informed consent which was audio recorded. During the semi-structured interviews, we asked clients to re ect on their current and an ideal interaction regarding team talk (i.e., having a safe relationship and collaborating as a team, informing clients that they can be part of the decision-making process and discussing shared goals), option talk (i.e., informing clients of all available options, and the pros and cons of these options), and decision talk (i.e., discussing the preferences of both the professionals and the clients of the available options and making a shared decision). We interviewed participants until data saturation was reached.

Data analysis
The recordings of the interviews were transcribed verbatim. The transcripts were coded using content analysis, applying open, axial coding and selective coding [23], using the Atlas.ti software program. First, MaVi coded the transcripts using open coding [23]. Thereafter, MaVi's retrieved open codes were categorized into subjects and themes [23]. During the process the transcripts and lists of open, axial and selective codes was independently and repeatedly checked by the rst researcher (MV) and discussed by the entire team to check the codes and to establish consensus.

Results
We conducted a total of fourteen interviews with clients from the four different municipalities. Our ndings are presented according to theme, that is: team talk, option talk and decision talk. We included quotations of the clients to illustrate our ndings.
1. Team talk 1.1. Professional and client collaborating as a team All clients indicated that being treated well by reintegration professionals was crucial for their RTW process. Clients described several aspects underlying good treatment. The rst was for professionals to be committed and adopt a personal approach, meaning that professionals should take their time and make an effort to get to know the clientunderstanding, compassionate, and provide positive support. This in contrast to being treated poorly, by professionals being "cold, insensitive and impersonal", according to clients. Clients added that professionals could achieve a committed and personal approach by listening carefully and giving clients the opportunity to express themselves and allowing them to be emotional. Some clients added their need to feel a connection between the professional and themselves.
"I think it also heavily depends on your reintegration professional. I used to have one that I never had a conversation with. And when we did speak the person was cold, insensitive and impersonal. Well, that does not really help; in such a situation my motivation plummets. If she does not want to help me, then forget it. So I do think a good connection is important." -Client 3 Secondly, clients stressed the importance of being taken seriously and being treated as an equal. To achieve this, clients explained that they preferred receiving information about the process, including that they had the autonomy to make their own choices and to disagree with the professionals. And even, for some clients, to be stimulated by the professional to believe in themselves and to take themselves seriously.
"I noticed that she gave me self-con dence. She would say: 'Yes, but you can do this'." -Client 3 Finally, clients explained that being treated well also means trusting each other. Several clients indicated that they felt they had to convince the professional, and justify their actions and reasoning. This negatively affected their self-image: "It makes you feel dependent and small." They strongly preferred supportive professionals who re ected on their needs and wishes "instead of focusing on laws and regulations". However, as some clients explained, it strongly depended on the professionals and the municipality they worked for.
"Getting a client manager who does not only act according to laws, but actually thinks along with you is a question of luck." -Client 1 Many clients provided examples of being treated with mistrust, which hampered their RTW process. For example, clients reported that professionals focusing on compliance with the law stated that if these clients did not follow the law it could result in a reduction or termination of the bene t. One client mentioned that she received letters from the municipality that only stated what was not allowed and what she was obligated to do, and closed with the statement that if she did not comply, she would lose her bene t. This resulted in her being very anxious about making mistakes for fear of losing her bene t, limiting her ability to be pro-active and take initiatives.
"Every time I am afraid that I might make a mistake, because making one mistake means no bene ts." -Client 12 Being treated well, helped clients to become more con dent and motivated throughout the process, to believe in the professional and in themselves, positively in uencing their adherence and commitment to the RTW process. Many clients explained that previous negative experiences with other, or even the same reintegration professionals, highly affected their self-con dence, motivation and their RTW process. These experiences have led some clients to indicate that they did not feel appreciated, stating that "it really affects you as a person." "In the end you have to do it yourself. But it is more about also being treated like a person and not a number." -Client 10 Clients mentioned two preconditions for team talk. The rst precondition related to the continuity of professionals supporting RTW. Clients preferred having a single professional "who knows my situation" and with whom they were able to build a relationship. Important reasons for a lack of continuity were professionals changing jobs, or due to municipalities spreading RTW tasks among various professionals, each providing support in a speci c eld (e.g., work, income, additional bene ts). Some clients said that a result of having various professionals is that "some professionals did not even have access to or looked into my case le", leaving clients with the feeling of having "to tell my story over and over again". In addition, some clients stated that a bond with the professionals grows over time, which is limited because of having to consult with multiple professionals.
"I can tell her everything: my personal problems, how I'm doing. She is aware of what people go through when they are in a situation like this. She knows my history. And it is easy for me to talk about it with her." -Client 2 The second precondition was the frequency of the contact. Clients who were satis ed with the treatment of the professional, described the professional as approachable and said to have had frequent contact with that professional. In most cases, the clients expressed that they could always text or call the professional for advice, questions or remarks. Other clients, who were either dissatis ed or neutral, had limited contact with their reintegration professional, or where even unaware of having a reintegration professional at all. "When I came to live here in 2008 I only had a single reintegration professional that I could ask all my questions to. But then everything changed. Now every time I ring them I get a different person, so I no longer know who can help me." -Client 12 1.2. Explain clients that they can be part of the process None of the clients was told that they could be part of the decision-making process. Some of the clients explained that they were pointed out the rights and responsibilities that they should comply with. Some clients even indicated that they had no clue who their reintegration professionals were, that they were not given any information about them, that they did not speak to them often, and did not know why they needed to perform certain actions to RTW and how these actions contribute to a RTW. With regard to their ideal interaction, most clients wished they had been informed that they could be part of the decisionmaking process.
"My reintegration professional pointed out that I had 'rights and responsibilities that I should comply with.'" -Client 4

Setting a shared goal
Almost all clients expressed that they strongly wished and aimed to RTW. Clients wanted to work so they could have their own income, could be nancially independent and rid themselves of the stigma associated with receiving bene ts. Some clients stated that because of the bene ts, others did not accept them or perceived them as "not contributing to society". Clients indicated that the goal of professionals was also RTW. However, this is explained mostly in letters from the municipality or through information by professionals, but not through shared communication and setting a shared goal.
"I wanted to become a terminal caregiver and I had done all the research. But the training course is expensive. And the municipality is not one to say, 'well, let's invest in that'. Because that is not in their interest. The municipality's goal is to nd you a paying job as soon as possible. Preferably tomorrow." -Client 13 Although the main goal of both clients and professionals was RTW, secondary goals on how to achieve a RTW seemed to differ between several clients and professionals. For example, some clients experienced a strong push towards a RTW, even though they still experienced limitations (physical, mental and external limitations, such as caring for children), limiting their possibilities of a RTW. This push towards a RTW, with the client having a different perspective on their ability to RTW, often resulted in misunderstandings and a resistance from the client towards a RTW.
"I even told the reintegration professional: 'I know you have a lot of rules and regulations, but look and listen to a person's background story. Do you believe I am here by choice? Do you really believe I enjoy this nuisance? I had quite a different idea about this and now everyone wants me to nd employment, but how I am supposed to do all that?'" -Client 7 Finally, some clients had a different view on RTW than the professional, meaning that several clients indicated that they wanted to have a 'real job' that suited their educational level and a nities. For instance, immigrants expressed that they had a ourishing career in their home country which they would like to pursue in the Netherlands. However, because their degrees are not recognised in the Netherlands, professionals offer them low-skilled jobs. In addition, some clients explained that they were offered small part-time jobs that did not provide enough hours to stop receiving bene ts and be nancially independent.
"I would like to learn a real profession, not to be trained to work in packaging." -Client 5 2. Option talk

Presenting choice options
Most clients indicated that the professional presented various choice options. Clients were mostly offered certain courses to lower experience barriers and increase the chance of a RTW. In other cases, clients themselves were proactive and proposed different choice options.
Interviewer: "Did the reintegration professionals help you nd out what you had to do to go back to school here in the Netherlands?" Interviewee: "Actually, I looked it up myself on the internet. (…) I can study three times a week and nd part-time employment for the other two days." -Client 8 Finally, some clients indicated that they were not presented choice options. One group of clients said that a lack of information caused them to feel completely in the dark about how to RTW, or what the value was of performing certain activities or interventions in relation to their RTW. Some clients also said that they were totally unfamiliar with all the possibilities and regulations of the Dutch systems of education and employment. In addition, they indicated an insu cient command of the Dutch language.
"I was a doctor in Syria, so the plan is to do a study connected to medicine. Maybe a nurse or something related to rst aid or health emergencies. I do not know what the possibilities are, because nobody has explained the Dutch regulations and systems." -Client 6 We also spoke to clients who mentioned that they "suddenly received a letter telling them to participate in a work-t trajectory without any explanation". They had no clue as to why they should follow the work-t trajectory, what the value of the work-t trajectory was for them to RTW or, in some cases, who their reintegration professional was. Most clients indicated a need for information on the available choice options and the usefulness of these choice options for a RTW.
"Until now the municipality had not done very much, really." Interviewer: "So what was the turning point?" Interviewee: "I received an email one day." -Client 4

Discussing the pros and cons
Several clients stated that when discussing options, professionals mostly focused on the negative aspects of choice options. For example, some clients indicated that professionals explained which options were not allowed by law. Other clients said that their reintegration professional would explain the negative aspect of an option if they did not think it was feasible for the client. Clients do not mention discussing pros and cons as part of their ideal interaction.
"I always discuss what I would like to do with my reintegration professional. And if she thinks it might be good for me, she allows me to do it." -Client 5

Decision talk
A great number of clients experienced that decisions were indeed made together when they had the feeling that efforts into the RTW process were evenly distributed between the professional and themselves. Other clients explained that the professional made the decision; in those cases most of the clients indicated that they did not bene t from such an intervention, because the intervention did not suit their needs and requirements. However, they followed up on it, because they were afraid of losing their bene ts. This mostly applied to reintegration professionals who assigned them pre-purchased interventions, such as schooling or (work) training ("why don't you try this") or job proposals done by professionals that do not meet the client's needs and requirements. Finally, some clients explained that some professionals are ambiguous; one moment they are told what to do, the next they are expected to take the initiative. None of the clients re ected on or evaluated decisions made with their reintegration professionals.
"I cannot prove it, but I have the feeling that all the clients that told the professional 'I want to work' ended up here. They pay attention to that and let those people work here. But I would not say that it has any a nity with what it is you want to do. I wish it did." -Client 13

Discussion
The aim of this study is to nd out how clients currently experience the SDM steps and which ones they prefer. Our ndings show that clients emphasise the importance of being treated well, meaning: to be treated with respect, to be treated as an equal, that the professional is committed and takes a personal approach, and that the professional trusts the client. None of the clients reported discussing a shared goal with the professional, or being told that they could be part of the decision-making process. Most clients expressed that choice options were presented, either by the professional or by the clients themselves. When choice options were discussed, only the negative aspects of the choice options were mentioned by the professional, including legal restrictions or that the option was not feasible for the client according to the professional. A great number of clients experienced that shared decisions were made thanks to efforts made by both the client and professionals in equal measure. Others indicated that decisions were made for them. None of the clients re ected on or evaluated decisions made with their reintegration professionals.
In the support clients receive in RTW, the way clients are treated seems to play an essential role. Clients re ected on previous negative experiences, in which their treatment was impersonal, insensitive or that they were approached with suspicion, mostly by professionals enforcing the law. Many clients indicated that this type of treatment caused feelings of insecurity and anxiety, compromising their RTW process. In line with this, de Winter et al. [17] explain that many municipalities and governmental organisations focus on the prevention of fraud, compromising their effective support for a RTW [13], while only a small amount of people actually commit fraud [17]. In fact, collaboration based on trust appears to be much more effective in the process of RTW [13]. This strongly indicates that municipalities can be more effective in supporting a RTW, according to both the literature on the subject and on the perspective of clients, if this support centred on trust, in direct support and indirect communication such as letters.
Remarkably, over half the clients said they did not know who their reintegration professional was or why they should perform a particular intervention and how this intervention advanced their RTW effort. From the clients' perspective, they were "suddenly" instructed to carry out a certain intervention, which they did out of fear of losing their bene ts. They received no explanation regarding the goal or value of the intervention for their RTW process. To be informed, so they can understand how the intervention contributes to their RTW process, is a rst step in self-management [17,24] and a crucial step in the motivation of clients [14]. Informing clients that they can be part of the decision-making process, and explaining why a particular intervention can help them RTW could therefore help clients and bene t the RTW process [14,17,24].
Aside from the lack of information, clients and professionals seem to have different perspectives on the goals that must be reached and the necessary actions to realise these goals. With regard to goals, both clients and professionals aim to RTW. However, professionals seem to opt for the rst feasible option to RTW and clients aim for a job that suits their needs. These results indicate that professionals and clients should discuss more frequently what a RTW implies and see if they can combine both their perspectives in a shared goal, while also taking into consideration the legal responsibilities of the reintegration professional (e.g., approving a disability bene t). Regarding actions taken to realise these goals, many clients mention that pre-purchased trajectories provide limited room for their personal needs. Interventions that do not t the needs of the client, limit feelings of control, autonomy and relatedness [14], reducing a client's motivation and nally his or her chances of a RTW. According to theories (e.g., , Theory of Planned Job Search Behaviour [25]) and research, it is more e cient and effective to cooperate with clients and deliberate what they need, and discuss barriers, attitude, self-e cacy, social norm, motivation, self-regulation, tasks and social skills [13], and what type of intervention suits their needs [26][27].
A limitation of this study is that relatively few clients applied, a problem commonly reported among these client groups [28]. To counter that problem, we made participation in the study as easy as possible. First by also using WhatsApp to register for the study, and later by conducting interviews in the municipalities. Although fewer clients participated than expected and interviews were conducted at different locations, we were able to gather su cient perspectives from different clients in the various municipalities to obtain data saturation. Another limitation is that we only included the perspectives of the clients. We also researched the perspectives of the professionals, but were unable to include the perspectives of both the clients and the professionals in one article, because of the amount and richness of the information. Therefore, we decided to divide the information into two articles [22], so that we can highlight in depth the various responses per theme.
With regard to current and future use of SDM in supporting a RTW, at this time none of the clients knew that they could be part of the decision-making process. So increasing a client's knowledge and skills with regard to SDM and the RTW process is necessary and can be facilitated by developing various tools and instruments available to clients that encourage self-management, such as decision-making aids, informational websites and campaigns [29]. Therefore further research is needed into what information and which tools actually support clients in SDM, and explore and acquire insight into the experiences of clients with those tools to assess if the use of SDM in the RTW process has added value.

Conclusions
With regard to team talk, this study underlines the importance of being treated well, which includes being treated in a personal manner, to be treated as an equal and in good faith. However, many clients report negative experiences and being treated in an impersonal and insensitive manner. Clients generally desire to cooperate and make shared decisions, but are limited in doing so because they lack information, they do not know that they can be part of the decision-making process, can have differing views on goals and choice options, which all limit the self-management ability of clients in the RTW process. Clients want information about and knowledge of the RTW process, the choice options regarding interventions and how these interventions promote them to RTW. Future actions and research should focus on developing tools and instruments to provide clients with the necessary knowledge and skills to cooperate with professionals and make shared decisions, and subsequently explore and acquire insight into the possible added value of SDM. This study was performed in accordance with the Declaration of Helsinki. The Medical Ethics Committee of the Netherlands Organisation for Applied Scienti c Research TNO determined that no ethical approval was required for this study. All participants were asked to provide a written informed consent per mail and, prior to the interview per telephone, an additional verbal informed consent which was audio recorded. The Medical Ethics Committee of the Netherlands Organisation for Applied Scienti c Research TNO approved the informed verbal consent, since it was a second consent in addition to the written informed consent per mail.

Consent for publication
Not applicable.

Availability of data and materials
The data is described in the themes, subthemes and anonymized participant quotations in this manuscript. Further data cannot be made publicly available due to The Medical Ethics Committee of the Netherlands Organisation for Applied Scienti c Research TNO. Interested researchers may direct data access requests to the corresponding author.

Competing interests
The authors declare that they have no competing interests.