Working with chronic health conditions and the disclosure decision-conflict: Development of a web-based interactive self-test to support an informed decision – A brief report

1 Introduction

The number of people of working age living with chronic health conditions has increased significantly in recent decades (Ward, 2015) and many of these conditions are not visible to others. However, they are often progressive, require (medical) therapy and may cause symptoms that interfere with work related tasks (Santuzzi et al., 2014). This can make meeting the requirements of both health condition and professional life a constant challenge. Thus, employees with chronic health conditions often face the difficult decision of whether or not to disclose their condition at work. During this decision-making-process possible positive consequences, such as receiving workplace adjustments, social support (Munir et al., 2005; Vickers, 1997) and the moral and psychological relief of not having to hide parts of their identity (Beatty & Kirby, 2006; Santuzzi et al., 2014) need to be weighed up against potential negative consequences (Prince, 2017). The most obvious negative consequence is discrimination, which can manifest itself in different forms, like being excluded from social activities, being overlooked for a promotion or being assigned to less challenging or rewarding job tasks (Munir et al., 2005; Santuzzi et al., 2014; Vickers, 1997). Anticipating whether or not any of these consequences will occur is not easy as it depends on a variety of contextual factors, i.e. type, severity, and course of the health condition, stigma associated with the condition, job requirements, organizational culture or relationships with colleagues and superiors (Beatty & Kirby, 2006; Munir et al., 2005; Schrader et al., 2014). Adding further to the complexity of the decision are the questions of when, to whom and how to disclose, considerations of legal rights and responsibilities, and personal values that may contribute to the acceptance of possible decision outcomes (Hayes et al., 2003; Jans et al., 2012). In consequence, employees with chronic conditions may feel overwhelmed and unable to make a decision that feels right (Santuzzi et al., 2014).

2 Materials and methods

After finishing the self-test, users will receive individualized feedback on how each of the topics influence the likelihood of positive or negative consequences in their specific situation. They are first presented with an overview including symbols that allow users to easily see which topics support disclosure in their specific situation and which do not. By clicking/tapping on a certain topic, they receive more detailed information about it. Fig. 1 shows an example of a detailed feedback on perceived emotional support by supervisor. In the example the user perceives their supervisor as supportive, which is a favorable condition for disclosure. Each feedback has a similar structure, starting with a short introduction on why the given topic is important, followed by the personal result based on the answers given in the self-test. The feedbacks then offer explanation about what this could mean for the disclosure decision and its consequences, including links to helpful resources such as in-person counseling and a variety of worksheets (e.g., how to prepare for a difficult conversation).

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Fig. 1

Screenshot of a feedback example (translated into English) on the topic of emotional support by supervisor.

Collaboration with the aforementioned advisory board and expert panel was crucial during all stages of development. In regular meetings the advisory board was able to advise on a variety of topics, such as distribution strategies, data protection and user friendliness. The expert panel gave input and feedback throughout the development process on layout, content, comprehensibility, and user guidance of the website. Members of the expert panel also participated in several usability tests before the website was launched. Content and design of the website were modified accordingly. The website launch was accompanied by an online event where the website and its development were presented to attendees from a variety of backgrounds (members of the target group, company doctors, organizational representatives, self-help organizations etc.) and media outlets to help raise awareness about its existence and use. Further, the project-team has presented (and continues to present) the website on conferences, and other events and is using a wide range of channels (supported by the advisory board, project partners and their networks) to ensure that it will reach the intended target group. Additional distribution strategies are ongoing and include the development of flyers and other informational material that can be easily distributed.

The (non-)disclosure of chronic conditions at work has far-reaching consequences for the health and workability of affected employees. Because of the complexity of the disclosure decision many feel overwhelmed and could therefore profit from support and counseling. However, seeking in-person support might not be an option for all, because it already requires some form of disclosure. Thus, the interactive web-based self-test offers support that is based on evidence and easily accessible for those who are not (yet) ready for personal counseling. It can also be used as part of rehabilitation counseling or therapy. Users can save the results of the self-test as well as the worksheets offered on the website locally or print them and then –if they wish to do so –discuss them with a counselor or therapist. The website also offers general informational content about (non-)disclosure, decision making and legal matters that is a helpful resource not only for employees with chronic conditions but also for counselors and therapists that support them in their disclosure decision.

Unlike other existing offers, the self-test is interactive, considers the individual situation of the user and provides individualized feedback. It is designed to empower users to make an informed decision that fits their personal situation, and it encourages them to seek personal counseling (e.g., by rehabilitation counselors). It thereby fosters the use of existing support structures for people with health conditions at work to make sure that their needs can be addressed adequately.