Participatory design and qualitative evaluation of a decision guide for workplace human immunodeficiency virus self‐disclosure: The importance of a socio‐ecological perspective

Abstract Background Disclosure of human immunodeficiency virus (HIV)‐positive status in a workplace can be a complex social decision for a person living with HIV. Objective To design a Decision Guide to support people living with HIV in assessing contexts, risks and benefits of workplace disclosure in choosing whether or not, or to what extent, to disclose. In this report, we review the participatory design of a Decision Guide prototype and focus on its evaluation. Methods We began with stakeholder input through an environmental scan and community consultation that informed the development of an online Decision Guide prototype. To evaluate the comprehensiveness, acceptability and usability of the prototype, we used qualitative methodology involving individual interviews and the think‐aloud technique. Interviews were transcribed and analysed qualitatively. Results Fourteen people, including people living with HIV and service providers, participated. We identified benefits of the Decision Guide related to comprehensiveness, acceptability and usability. Additional interview themes focused on disclosure concerns, mitigating risks associated with disclosure and additional considerations for the Decision Guide. Conclusions The Decision Guide was perceived to be acceptable, comprehensive and useful. The findings endorse the application of a socio‐ecological perspective when designing decision support aids for complex social decisions. Patient or public contribution People with lived experience of HIV were involved in the prototype design phases as research team members. They, along with community leaders and service providers, also participated in a community forum and were key informants for the evaluation of the Workplace Disclosure Decision Guide prototype.


| BACKG ROU N D
People living with human immunodeficiency virus (HIV) can live long term in good health interspersed with periods of disability. 1 Episodes of poor health and disability can increase over time as people experience the cumulative effects of the health challenges of ageing with HIV. 2 Stigma and discrimination are some of the biggest challenges facing people living with HIV, 3 making disclosure of HIV-positive status in community environments such as workplaces a high-stake decision. 4 In this paper, we describe the development of a decision support aid to assist people living with HIV to make decisions about whether or not, and the level to which, to disclose their HIV-positive status in the workplace.
The decision of whether to disclose one's HIV status is complex and may be driven by social pressures to disclose, individual health and social needs and, simultaneously, the desire to protect personal privacy and prevent potential stigmatization and discrimination. Fear of stigmatization can have ripple effects related to unwanted third-party disclosure with negative consequences in other environments. 5 The disadvantages of disclosure in workplaces may be compounded for people experiencing intersecting forms of stigmatization (eg men who have sex with men, racialized people, immigrants and refugees) and people who may be economically vulnerable. 6 Alternatively, many people who have partially or fully disclosed their HIV status in the workplace have reported that they benefited through receiving workplace accommodations, support from co-workers and decreased stress. 7 Disclosure can have broader social benefits by providing opportunities for role modelling, education and stigma reduction. 8 People living with HIV have a right to make decisions about disclosure.
A decision aid has the potential for assisting people to make informed decision.
Decision aids have been developed to assist people receiving care to make complex medical intervention decisions for which there is no clear advantage to a particular decisional option. Medical decision aids engage people in decision making by explicating the specific decision to be made, providing information about the options and outcomes, and clarifying values. 9 In a systematic review, Stacey et al 10 concluded that decision aids for treatment and screening decisions improve people's active role in decision making, knowledge of risks and benefits, perceptions of being informed and perceived clarity about their values in relation to the decision, while reducing feelings of decisional conflict. We applied the principles and processes of decision aid development to design a Decision Guide for the complex social decision of disclosure decision making in the workplace.

| Guiding frameworks
We combined two frameworks to design the Workplace Disclosure Decision Guide: the disclosure process model (DPM) 11,12 and the Ottawa Decision Support Framework (ODSF). 13 The DPM proposes that a disclosure decision by a person living with HIV is determined by antecedent goals, the disclosure event, mediating processes and outcomes (personal and social), and a feedback loop that influences subsequent disclosure decisions. 12 Attention needs to be paid to the mediating contextual (personal and social) factors that will influence the decision and outcomes. In this regard, we recognize the intersecting socially constructed identities (eg race, ethnicity, gender, sexual orientation, ability) that contribute differently to each individual's personal and social circumstances and shape each decision to disclose in unique and multiple ways. Intersectionality 14 as applied here highlights the importance of analysing and understanding how individuals considering disclosure in the workplace need to examine the risks associated with their HIV status, as well as additional socially stigmatized identities.
We also applied basic elements of the ODSF that combine several decision-making theories. 15 The framework provides guidance for decision aid development that meets the person's decision needs including resolving decisional conflict, clarifying the decision and the person's values associated with the decision and creating a good outcome for the person based on relevant information and the person's values. 13

| OBJEC TIVE AND ME THODS
The overall objective of the project was to develop a Decision Guide to support people living with HIV to assess contexts, risks and benefits of workplace disclosure in choosing whether or not, or to what extent, to disclose. We begin by describing the process of creating the Decision Guide prototype. We then describe the methods and results of the prototype evaluation.

| Prototype design
The design process is summarized in Figure 1. We initiated the project by engaging a community-based research team consisting of researchers, service providers and people living with HIV to complete an environmental scan of needs and supports for decision making for workplace disclosure. The environmental scan included a literature review and cross-Canada survey of 94 people living with HIV, service providers and other experts in HIV and employment. The results of the environmental scan identified some supports, such as counselling or print information about disclosure, yet a lack of tools to facilitate decision making that are readily available to people living with HIV. Respondents also shared perspectives of important considerations for workplace disclosure decision making. These results are published elsewhere 16 and not repeated here.
The second phase consisted of a one-day consultation with 30 participants including community stakeholders from across Canada and the research team. Participants with lived experience were recruited from respondents to the environmental scan survey who agreed to be contacted for follow-up and recruitment notices sent to HIV-related organizations. We recruited service providers and policymakers through invitations to people who were part of existing HIV-related networks. The consultation was approved by the local research ethics board. All participants provided informed consent.
Participants reported that their knowledge of HIV disclosure came from lived experience (n = 16), service provision (n = 13), being a researcher (n = 11) and policymaking (n = 4), with some participants identifying in more than one category. The majority (57%) were female. The average age of the participants was 49 years (SD = 9.4 years). Participants came from a variety of ethnic/racial backgrounds with 16 self-identifying as Caucasian, White or similar; 6 identifying as Indigenous (First Nation or Métis); seven identifying as African, Black or Latin American; and three participants declined to respond. Some participants identified with more than one group.
Two participants reported that they were a landed immigrant or refugee. Of all participants, 13 identified as heterosexual, 16 as gay, lesbian, bisexual or queer; and one declined to respond.
We began a one-day (6 hour) knowledge exchange process by sharing the results of the environmental scan using deliberative dialogue 17 and integrated knowledge translation approaches. 18 We used a World Café 19 approach to engage participants in small group conversations. Participants responded to three stimulus questions throughout the morning. Question topics focused on what to include in a workplace disclosure decision guide; ways to make it safe and easy for people to access and use a decision guide; and solutions to barriers to using a decision guide. Table hosts collected written notes of the ideas generated. We themed responses to the World Café questions as an interactive process within the large group.
After the session, the research team continued to discuss and theme the responses related to the development of a decision guide.
Results revealed the components of a Decision Guide that the group deemed most important: education about human and workplace rights, disclosure processes, benefits and risks of disclosure, and maintaining confidentiality. Participants suggested including links to additional resources and ensuring safe access to the Decision Guide for people from diverse cultures, languages, ages, abilities and social circumstances.
To gather more in-depth feedback from stakeholders, the results from the development phases were transformed into a high-fidelity interactive (clickable) online prototype Workplace Disclosure Decision Guide using Adobe Xd software ( Table 1). The software provided the ability to create relatively quick and low-cost iterations in response to feedback, allowing stakeholders to more easily influence the direction of the content and its presentation at the critical early stages. Further, creating an interactive prototype allowed stakeholders to provide insights that might not otherwise become apparent.
The prototype was informed by the DPM 11,12 and ODSF. 13 We paid attention to a balance of options 20 by favouring neither disclosure nor non-disclosure. To take into account that HIV-related disclosure often occurs on a continuum over time, 21

| Proof of concept of the workplace disclosure decision guide
The next phase of guide development, and the focus of this report, was to validate the Decision Guide prototype by obtaining the perspectives of key stakeholders about its comprehensiveness, acceptability and usability. We used qualitative methodology involving individual interviews using the think-aloud technique 25 in which participants are asked to verbalize their thoughts as they scrolled through an online version of the prototype. We chose the think-aloud technique and semistructured interview questions to obtain detailed perspectives about the content and process of the Decision Guide. This approach facilitated discussion about, and experiences with, workplace disclosure.

| Recruitment
We purposefully recruited participants from two groups: (a) people living with HIV and (b) service providers who were clinicians or employment experts (eg employee rights advocates). We sent e-mail invitations, through the research team's existing networks of individuals and HIV-related organizations in Canada established through initial phases for the prototype design and previous HIV-related research. The study was approved by the local university research ethics board. All participants provided informed consent.

| Procedures
Participants were interviewed by the second author via web-based

| RE SULTS
Interviews were conducted from April to September 2019. Six

| Theme 1: Benefits of the decision guide
Participants identified several benefits of the Decision Guide. It 'fuels thoughts' to support decision making, educates about disclosure rights and reduces stigma associated with HIV.

| Lack of confidentiality and protection of privacy
Most participants expressed concern about the lack of confidentiality and protection of their privacy once they disclosed their health status. As one participant summarized, 'There are no secrets in the workplace' (P8). Another participant said that disclosure is 'too big for people not to share it' (P4). Third-party disclosure was a concern.
A minority believed that their co-workers 'disclosed on (their) behalf, thinking that they're going to help you' (P4). In contrast, most participants believed that third-party disclosure was related to stigma.

| Theme 3: Mitigating risks associated with disclosure
Participants shared their perspectives on ways to combat risks associated with intentional or unintentional disclosure of their health status in the workplace. These strategies grouped into four categories: making intentional disclosure decisions, taking assertive action to safeguard privacy, having a caring social circle and having strong and enforced legislation and workplace policies.

| Making intentional disclosure decisions
Participants were unanimous about the need to make intentional decisions about whether, when, how much and to whom to disclose in the workplace. A service provider said that some individuals with HIV want to disclose, 'to as few people as possible; who's the one person that actually needs to know' (SP6). A participant who had disclosed in the workplace mentioned the importance of timing, stating that they recommend disclosing after the probationary period since, 'Before that, you're always skating on thin ice' (P1). Another participant said they recommended not disclosing 'until it's going to help you' (P4).

| Taking assertive action
Participants acknowledged that confidentiality is not guaranteed when disclosing to an employer. One service provider said, 'While it is the law that your employer must maintain confidentiality about your health status, that's not always what happens' (SP5). Some participants with lived experience took pre-emptive action to educate themselves about their rights prior to disclosure. One participant said, 'that's why I went through those additional steps (of knowing my rights) so that I would have the legal hammer' (P1).
Other participants described confronting colleagues who made third-party health disclosures stating, 'I went and actually talked to the chain of people. There was no maliciousness … all I wanted to explain to them was this is just something that is private' (P4).

| Having a caring social circle
Having a caring social circle that is not overly protective was highly valued by the participants. One participant 'started (an) HIV peer support group' (P1), after disclosing to a colleague. Participants noted that they received support from people with another stigmatized health condition such as hepatitis C. Although participants acknowledged the benefit of having a caring social circle, one participant cautioned against the social circle being overly protective, saying, 'I don't want to be treated differently, that is why I don't disclose. Not differently in terms of negative, but differently in trying to be too careful' (P5).

| Having strong and enforced legislation and workplace policies against discrimination
Participants acknowledged that the risks of discrimination are still present, despite current legislation in place to protect discrimination in the workplace. One service provider shared that although people who work in health care are bound by legislation to protect personal health information many workplaces do not know about or enforce legislation and policies that protect confidentiality and privacy after a health status disclosure. In addition, pursuing complaints when legislation or policy is not upheld is not always feasible. One participant said:

| Theme 4: Considerations for a comprehensive and useful final version of the decision guide
Participants  Previous research has endorsed the empowering effects of people taking control over disclosure decisions. 8  The attention we have paid to disclosure decision making does not negate the responsibility of workplaces to create psychologically safer spaces for people living with an invisible disability to disclose their health status. 34,35 Likewise, policy-level initiatives to reduce stigmas, repeal stigmatizing and discriminatory laws and processes, and promote workers' rights are warranted. The Workplace

| D ISCUSS I ON
Disclosure Decision Guide can facilitate discussions about these topics in the workplace, adding to the Guide's utility.

| Limitations and future directions
We recruited participants from diverse backgrounds and social identities providing a rich source of information for the study.
Although the sample size was consistent with sizes for feasibility studies, we may not have identified a full range of perspectives.

| CON CLUS IONS
The iterative approach through which we developed the Workplace Disclosure Decision Guide resulted in a prototype that was perceived as comprehensive, acceptable and useful by participants in this study. Disclosure of HIV-positive status in the workplace can be a complex decision with risks and benefits. The findings from this study endorse the application of a socio-ecological perspective when developing decision guides so that people can make highquality personal decisions in the contexts in which they live and work.

ACK N OWLED G EM ENTS
We are grateful for the knowledge and expertise of the research team members and participants in all phases of this project.

CO N FLI C T O F I NTE R E S T
All authors declare that they have no conflicts of interest with regard to this research.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study may be available in a condensed or combined form that will not identify participants.
The data are not publicly available or are restricted due to privacy or ethical restrictions.