A Living Ethics Project to Address Psychological Distress in Chronic Illness: Process and Outcomes.
Introduction: Individuals living with a complex or rare chronic disease live a life where the use of healthcare services and self‐care are part of their quotidian and even of their identity. They may, as a result, experience significant psychological distress. Yet, specialized healthcare providers (...
| Publicado en: | Health Expectations Vol. 28; no. 6; pp. 1 - 16 |
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| Autores principales: | , , , , , , |
| Formato: | directories forms pictorial research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Dec2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=190444479&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 190444479 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 13696513 EVY jtl: Health Expectations issn: 13696513 maglogo: Y pubinfo: dt: Dec2025 vid: 28 iid: 6 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 190444479 190444479 190444479 10.1111/hex.70457 190444479 ppf: 1 ppct: 15 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: A Living Ethics Project to Address Psychological Distress in Chronic Illness: Process and Outcomes. aug: au: D'Anjou, Bénédicte Desjardins, Katherine Ianniruberto, Julie Méthot, Danielle Poulin, Valérie Rabasa‐Lhoret, Rémi Racine, Eric affil: Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Montréal Québec,, Canada sug: subj: Psychological Distress Prevention and Control Chronic Disease Prevention and Control Rare Diseases Prevention and Control Research Ethics Diffusion of Innovation Collaboration Canada Information Resources Human Semi-Structured Interview Task Performance and Analysis Participant Observation Research Methodology Multidisciplinary Care Team ab: Introduction: Individuals living with a complex or rare chronic disease live a life where the use of healthcare services and self‐care are part of their quotidian and even of their identity. They may, as a result, experience significant psychological distress. Yet, specialized healthcare providers (HCPs) who manage their care are often ill‐equipped to respond to the emotional or social dimensions of their patients' illness and intervene in a meaningful way. Methods: In this paper, we report on the process and outcomes of a living ethics project, structured as a living lab. The living lab followed a five‐phase methodology, each phase involving various research methods (e.g., semi‐structured interviews, group interviews) and oriented toward distinct tasks: identifying the issue (phase 1: problem identification), deepening understanding (phase 2: problematization), co‐developing interventions (phase 3: ideation), implementing them (phase 4: enactment), and evaluating the interventions and the overall process (phase 5: evaluation). Results: Phase 1 led to the identification of neglected psychological distress of patients as an important ethical issue. Phase 2 exhibited causes and consequences of psychological distress. Phase 3 led to the co‐development of: (1) an electronic medical appointment preparation form for patients, aimed at guiding medical consultations based on their specific needs, facilitating communication, and opening discussions about mental health; (2) a directory of mental health resources intended for clinic staff to better equip them in addressing the mental health of patients; and (3) mental health awareness posters with catchy slogans strategically placed throughout the clinic to raise awareness about mental health and encourage open discussions. Phase 4 led to the implementation of these interventions and phase 5 to their evaluation. All interventions were evaluated positively as well as the participatory nature of the research project while many core aspects of living ethics were furthered. Conclusion: This project shows that directly engaging stakeholders in ethics research, by addressing the moral issues they deem significant and working with them to tackle those issues rather than conducting research on them, can lead to tangible, unexpected, and positive moral and clinical outcomes, even within a short timeframe and with limited resources. pubtype: Academic Journal doctype: directories forms pictorial research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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