Abstract
BACKGROUND:
For employees with chronic health conditions the decision of whether or not to disclose their condition to colleagues or supervisors is both far reaching and hard to make.
OBJECTIVE:
Collaborating with a panel of experts on their own behalf, we developed a web-based self-test to provide easily accessible decision support for those who are not (yet) ready for personal counseling.
METHODS:
This report provides an overview of the web-based self-test supporting an informed disclosure decision in the workplace.
RESULTS:
The self-test consists of a series of questions about the user’s personal situation. In order to reach a broad target-group it is applicable across health conditions and is made available online.
CONCLUSION:
Unlike other existing web-based offers the self-test is interactive, considers the personal situation of the user and provides individualized feedback that refers to additional resources (e.g., personal counselling).
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).
Materials and methods
The need for easily accessible support
Although the relevance and complexity of the disclosure decision are being more and more acknowledged –both in international research and in form of practical information and support offered to the target group –there is a need for easily accessible, evidence-based counseling and support (Chan et al., 2009). While a number of support services regarding the disclosure decision for employees with chronic conditions are available, such as rehabilitation counselors, company doctors or self-help organizations, seeking in-person counseling already requires some form of disclosure which may be a barrier for some. Thus, many turn to the internet for advice, as the access to information is simple and anonymous. The reliability of this information, however, is not guaranteed. Therefore, the aim of the present project was to produce easily accessible support in form of a website (sag-ichs.de) featuring an evidence-based interactive self-test that is tailored to the target group. This website aims to empower employees with chronic conditions to make an informed decision in line with their personal situation and needs, without favoring one option over the other. Further, it encourages to seek personal counseling if needed. There are some projects with similar goals (e.g., The National Collaborative on Workforce and Disability for Youth, 2005). However, none of the previously existing support-tools are equivalent to the concept of the present project as they neither use interactive tools nor offer individualized feedback tailored to the specific situation of the user.
Development of a web-based interactive self-test
The two most important factors in developing the self-test were to provide content based on scientific evidence while ensuring a target group orientation. This process entailed the analysis of literature, theoretical models and empirical findings and was supported by an advisory board including relevant stakeholders (e.g., company doctors, representatives of self-help organizations, health insurances and vocational rehabilitation institutions) as well as an “expert panel” of employees with chronic conditions representing the target group.
The self-test consists of a series of questions about the user’s personal situation. In order to reach a broad target-group it is applicable across health conditions and is made available online. Online accessibility and data protection had highest priority and were ensured by following WCAG guidelines for online accessibility (including a review process by an external reviewer) and the EU’s General Data Protection Regulation (GDPR). The concept of the self-test is based mainly on expectancy-value theories (e.g., Ajzen, 1985). According to these theories, positive and negative consequences of a decision, the likelihood in which they occur and ways to deal with them need to be considered in the decision-making process. As described above, the disclosure decision puts people in a dilemma where hope for support conflicts with fear of stigmatization (Bauer et al., 2017). Hence, the likelihoods of these positive and negative outcomes need to be evaluated and weighed up against each other. The self-test facilitates this process by presenting questions that help users to reflect on factors that, according to research, may influence the occurrence of possible consequences after (non-)disclosure. Examples for such factors included in the self-test are: emotional support by supervisors, team atmosphere or characteristics of the chronic condition. The self-test also helps to reflect on individual values and needs that may influence the personal evaluation of consequences. Table 1 gives an overview of all topics that are covered by the self-test including example itemsrmbox1\footnote [1]A detailed table that includes references for the development of the scales and items used in the self-test can be requested from the authors..
Topics covered in the self-test including question-types and example items
Topics covered in the self-test including question-types and example items
Question types: M = Matrix; SC = Single Choice; MC = Multiple Choice; O = Open ended. All Matrix questions were asked on a scale from 1 (I don’t agree at all) to 5 (I agree completely), except question 11 : 1 (Others don’t think this at all) –5 (Others think this a lot) and 12–15 : 1 (very similar) to 5 (not similar at all).
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).
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.
Footnotes
Acknowledgments
The authors would like to thank their project partners, the advisory board, and expert panel for their support throughout the project.
Conflict of interest
The authors declare that they have no conflict of interest.
Ethical disclosure
Official ethics approval was not required because we obtained no research data from the expert panel. The collected data was only used to develop the self-test.
Funding
The project was funded by the German Federal Ministry of Labor and Social Affairs and Abbvie Germany (project no. AGF.00.00001.18).
Informed consent
All expert panel participants provided written consent and were given extensive information about the procedure before their first involvement in the development process. Written informed consent was also obtained from all users before the start of the self-test. Persons who did not consent were not involved.