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

BackgroundDisclosure of human immunodeficiency virus (HIV)‐positive status in a workplace can be a complex social decision for a person living with HIV.ObjectiveTo 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.MethodsWe 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.ResultsFourteen 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.ConclusionsThe 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 contributionPeople 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.     

Emotional disclosure through patient narrative may improve pain and well-being: results of a randomized controlled trial in patients with cancer pain

Narrative medicine is based upon physicians' awareness of patients' narration of their suffering, their hopes, and how illness has affected them. It offers a model for improving health outcomes. To determine whether incorporating a narrative approach in patients with cancer decreases pain intensity and improves their global sense of well-being, we performed a randomized, single-blind controlled trial in adult patients with cancer and average pain intensity levels of at least 5/10. Two hundred thirty-four patients were randomized into three groups: (1) narrative (n=79), in which patients wrote a story about how cancer affected their lives for at least 20 minutes once a week for three weeks; (2) questionnaire (n=77), in which patients filled out the McGill Pain Questionnaire; and (3) control (n=78), in which patients came weekly to medical visits during which they received usual customary care. Patients rated their pain on a 0-10 scale and their well-being on a seven-point Likert scale weekly for eight weeks. Two raters independently evaluated the emotional content of the narratives. Pain intensity and sense of well-being were similar in all groups before and after treatment. Subgroup analyses showed that patients whose narratives had high emotional disclosure had significantly less pain and reported higher well-being scores than patients whose narratives were less emotional. Further study is needed to demonstrate whether the implementation of narrative medicine is associated with health benefits in this and other contexts.     

A wish to know but not always tell – couples living with dementia talk about disclosure preferences

Most research on disclosure issues in dementia has focused on what it is like to receive a dementia diagnosis. Little is known about the disclosure preferences that people with dementia and their cohabiting spouses have. In this study, we explore disclosure preferences and focus on what couples living with dementia want to know and tell about the disease. The study is based on 40 qualitative interviews (20 with people with dementia and 20 with their spouses). The analysis revealed five preference patterns regarding what the couples wanted to know and how they felt about sharing information concerning the disease with others. The patterns have been called: (1) want to know and tell (no reservations about it); (2) want to know and tell (some reservations about it); (3) want to know but do not want to tell; (4) want to know but cannot decide if we want to tell and (5) cannot agree on either knowing or telling. They show that couples’ preferences about what they want to know are related to what they are willing to tell. The findings also show that it is usually the preferences of the person that has a dementia diagnosis that guide the stand that couples take as far as disclosure issues are concerned. Thus, the findings show the type of interdependence that exists when one person in a couple has received the diagnosis, and the life of the two people as a couple is challenged as a result of this.     

What is important to the decision to disclose nonsuicidal self-injury in formal and social contexts?

Objective

Disclosure of nonsuicidal self-injury (NSSI) is associated with a range of both positive (e.g., help-seeking) and negative (e.g., discrimination) outcomes. The aim of this study was to assess the importance of a range of factors concerned with: NSSI experiences, self-efficacy to disclose self-injury, interpersonal factors, and reasons for or expectations of disclosure, to the decision to disclose self-injury to friends, family members, significant others, and health professionals.

Methods

Three hundred seventy-one participants with lived experience of NSSI completed a survey in which they rated the importance of the aforementioned factors to the decision of whether to disclose NSSI to different people. A mixed-model analysis of variance was conducted to investigate whether the factors differed in importance and if this importance differed across relationship types.

Results

All factors held importance, though to differing degrees, with those related to relationship quality being most important overall. Generally, factors relating to tangible aid were considered more important when considering disclosure to health professionals than to other people. Conversely, interpersonal factors, particularly trust, were more important when disclosing to individuals in social or personal relationships.

Conclusion

The findings provide preliminary insight into how different considerations may be prioritized when navigating NSSI disclosure, in a way that may be tailored to different contexts. For clinicians, the findings highlight that clients may expect tangible forms of support and nonjudgment in the event that they disclose their self-injury in this formal setting.     

The influences of sociocultural norms on women's decision to disclose intimate partner violence: Integrative review

Sociocultural norms against women can contribute to promoting intimate partner violence (IPV) and shape women's decision to disclose IPV. A cross-cultural analysis of the existing literature is needed to present an overview of the influences of sociocultural norms on women's decisions regarding the disclosure of IPV across different cultural contexts. The purpose of the review was to synthesize published quantitative, qualitative, and mixed methods (MMs) studies to identify known sociocultural norms across different cultures that may influence women's decision to disclose IPV. The Whittemore and Knafl framework, Rayyan software, and PRISMA flow diagram were used. Databases included APA PsycInfo, CINAHL, PubMed, SocINDEX, and Women's Studies International. The quality of studies was assessed by the MMs appraisal tool. A total of 15 research articles written in English and published in peer-reviewed journals were included. Main categories emerged: (1) stigma surrounding IPV disclosure, victimization, and divorce; (2) gender roles; (3) preserving family honor; and (4) Children's well-being and future. A one-size-fits-all approach is not adequate for women who are considering disclosing IPV. Findings underscore that regardless of residing in individualistic countries, those sociocultural norms related to traditional gender roles and gender inequality are still important barriers to the disclosure of IPV among women with collectivist roots.     

Medical error disclosure in the Italian healthcare context: A delicate balance between ethical obligations and the principle of non-self-incrimination

Surprisingly, Italian legal doctrine and jurisprudence never systematically address the medical error disclosure issue. The topic of medical error communication represents a non-negligible profile of interest, relating to the possible detrimental effects on doctors who accuse themselves of conduct that does not comply with the lex artis. The effects of error disclosure on the effectiveness of insurance guarantees in civil and administrative liability are particularly relevant, as are the implications for ethical liability. Although the burden of reporting an error falls within the wide range of informative duties doctors hold, it still seems far from having found a factual statement in clinical practice, especially in Italy. This applies whether the error has a marginal or significant impact on the patient’s health. The reasons lay in a very contradictory legal framework. Doctors tend with increasing ease not to comply with their information obligation – especially in cases where fulfilling this duty means admitting a personal, professional error – to preserve the integrity of their professional images. This article aims to offer a brief overview of that topic in the context of Italian healthcare.