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

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.

Why Do Clinical Practice Guidelines Get Stuck during Implementation and What Can Be Done: A Case Study in Pediatric Rehabilitation.

Aims: The purpose of this study was to obtain the perspectives of occupational and physical therapists working in pediatric rehabilitation about the factors that influence implementation of clinical practice guidelines (CPG) using the case of constraint induced movement therapy (CIMT). We aimed to identify factors that hinder implementation of CPGs and strategies for overcoming barriers when widespread implementation is stalled.Methods: Qualitative case study methodology was bounded within the parameters of CIMT implementation in pediatric rehabilitation in one jurisdiction. Twenty-one occupational and physical therapists participated in one of three focus groups. Data were analyzed using an inductive qualitative approach.Results: Participants viewed CPGs as useful, and emphasized the importance of consistency between guidelines and relevance to practice context. Therapists considered the "art and science" in clinical decision-making. Barriers and facilitators to CPG implementation were identified at the client, clinician, intervention location and systemic level. Potential solutions to help "unstick" guideline implementation were consistent with theories of collective knowledge exchange and mindlines.Conclusion: The presence of CPGs does not ensure evidence uptake; understanding of local barriers is required. This case study highlights the value of a collective knowledge exchange approach and attention to the social structures of knowledge development and evidence use.

Collaborating with a Youth Council to Improve Chronic Pain Resources.

Background: There is a recognized need to involve people with lived experience of chronic pain when developing chronic pain resources. Aims: The aim of this study was to develop, implement, and evaluate a short-term youth council focused on eliciting youths' recommendations for key features of chronic pain informational resources. Methods: In this mixed methods instrumental case study, demographic data were collected via Survey Monkey®. Select Patient-Reported Outcomes Measurement Information System® brief measures were used to provide context regarding pain impact within this group. Participants completed an initial interview, which informed youth council workshop delivery. Over two youth council workshops, participants reviewed select informational resources and identified key features of chronic pain resources. Participants evaluated their involvement experience during a second interview. Qualitative data were transcribed and analyzed using directed content analysis. Member-checking occurred during a third workshop, held virtually. Results: Seven youth self-identifying as girl/woman or demi-girl participated. The youth were satisfied with the youth council experience, highlighting the importance of meeting others, a relaxed environment, and participating in valuable work. A list of youth-identified key features for informational resources was created through the workshops, which includes considerations for audience groups, content, and presentation. Conclusion: Participants' input into youth council development and meeting others with lived experience contributed to a safe and supportive involvement experience. Youth council involvement supported the development of preliminary recommendations for chronic pain informational resources.

Contexte: Il est largement reconnu qu'il est essentiel d'impliquer les individus ayant une expérience personnelle de la douleur chronique dans le processus de création de ressources sur la douleur chronique.Objectifs: Cette étude visait à établir, mettre en œuvre et évaluer un conseil consultatif composé de jeunes, à court terme, dans le but d'obtenir leurs recommandations concernant les caractéristiques essentielles des ressources d'information sur la douleur chronique.Méthodes: Dans le cadre de cette étude de cas instrumentale utilisant une approche mixte, des données démographiques ont été collectées via Survey Monkey®. Des mesures brèves du Système d'information sur les mesures des résultats déclarés par les patients® ont été sélectionnées pour contextualiser l'impact de la douleur au sein de ce groupe. Les participants ont ensuite complété un entretien initial, qui a servi de base pour la mise en œuvre de l'atelier du conseil des jeunes. Au cours de deux ateliers du conseil des jeunes, les participants ont examiné des ressources d'information sélectionnées et ont déterminé quelles devaient être les principales caractéristiques des ressources en matière de douleur chronique. Les participants ont évalué leur expérience de participation au cours d'un deuxième entretien. Les données qualitatives ont été transcrites et analysées à l'aide d'une analyse de contenu dirigée. Une vérification par les membres a été effectuée lors d'un troisième atelier, qui s'est tenu virtuellement.Résultats: Sept jeunes s'identifiant comme filles/femmes ou demi-filles ont participé à l'étude. Les jeunes se sont déclarés satisfaits de leur expérience au sein du conseil des jeunes, soulignant l'importance de rencontrer d'autres jeunes, d'un environnement détendu et de la participation à un travail utile. Une liste des caractéristiques clés identifiées par les jeunes pour les ressources d'information a été dressée au cours des ateliers. Celle-ci comprenait notamment des considérations relatives aux groupes cibles, au contenu et à la présentation.Conclusion: La contribution des participants à l'élaboration du conseil des jeunes et la rencontre avec d'autres personnes ayant une expérience personnelle ont contribué à une expérience de participation sûre et positive. La participation du Conseil des jeunes a contribué à l'élaboration de recommandations préliminaires concernant les ressources d'information sur la douleur chronique.

Understand me: Youth with chronic pain on how knowledge gaps influence their pain experience.

Background: There is a perceived lack of readily available resources to support self-management skills in youth living with chronic pain. The perspectives of youth regarding information gaps may improve the effectiveness of resources developed for them. Aim: The aim of this study was to explore the perspectives of youth living with chronic pain on the interactions among their pain experiences, chronic pain resources and research. Methods: Using an interpretive paradigm, we interviewed seven participants (age range 12-19 years) diagnosed with chronic pain. Two frameworks for meaningful engagement of citizens in research and policy informed the interview guide. Data were analyzed inductively using content analysis approaches to examine patterns and develop themes. Results: The participants' perceptions were captured by the overarching theme of "understand me." Four subthemes elaborate on the relationship between the participants' experiences and how their lives could be enhanced through research and knowledge mobilization. In the subtheme "my unique pain experience," the participants help us understand them by chronicling the variation in presentation of their chronic pain. The subtheme "people don't know it's a thing" emphasizes that there is general misunderstanding of chronic pain by the public and in the participants' support systems. The first two subthemes influence the third, which describes how the pain "kind of stops you from living." The fourth subtheme, "knowledge offers hope," offers a solution to dismantling misunderstanding of youth living with chronic pain. Conclusion: Future work needs to focus on embedding health literacy and knowledge mobilization into health and education structures to promote developmentally relevant self-management skills.

Contexte: Il y a un manque perçu de ressources facilement disponibles pour soutenir les compétences d'auto-prise en charge chez les jeunes vivant avec de la douleur chronique. Les points de vue des jeunes sur les lacunes en matière d'information peuvent améliorer l'efficacité des ressources mises au point pour eux.Objectif: Le but de cette étude était d'explorer les perspectives des jeunes vivant avec de la douleur chronique sur les interactions entre leurs expériences de douleur, leurs ressources de douleur chronique et leurs recherches.Méthodes: À l'aide d'un paradigme d'interprétation, nous avons interrogé sept participants (âgés de 12 à 19 ans) qui avaient reçu un diagnostic de douleur chronique. Deux cadres pour une participation significative des citoyens à la recherche et aux politiques ont éclairé le guide d'entrevue. Les données ont été analysées par induction à l'aide d'approches d'analyse du contenu afin d'examiner les modèles et développer des thèmes.Résultats: Le thème général de « comprenez-moi ¼ reflète bien les perceptions des participants. Quatre sous-thèmes approfondissent la relation entre les expériences des participants et la façon dont leur vie pourrait être améliorée par la recherche et la mobilisation des connaissances. Dans le sous-thème « mon expérience de douleur unique ¼, les participants nous aident à les comprendre en racontant les variations dans la façon dont leur douleur chronique se présente. Le sous-thème « les gens ne savent pas que ça existe ¼ souligne qu'il y a une incompréhension générale de la douleur chronique par le public et dans les systèmes de soutien des participants. Les deux premiers sous-thèmes influencent le troisième, qui décrit comment la douleur « vous empêche de vivre en quelque sorte. ¼ Le quatrième sous-thème, « les connaissances apportent de l'espoir ¼, offre une solution pour démanteler l'incompréhension des jeunes vivant avec la douleur chronique.Conclusion: Les travaux futurs doivent se concentrer sur l'intégration de la littératie en santé et de la mobilisation des connaissances dans les structures de santé et d'éducation afin de promouvoir des compétences d'auto-prise en charge pertinentes sur le plan du développement.

Cervical external immobilization devices: evaluation of magnetic resonance imaging issues at 3.0 Tesla.

STUDY DESIGN: Laboratory investigation, ex vivo. OBJECTIVE: Currently, no studies have addressed the magnetic resonance imaging (MRI) issues for cervical external immobilization devices at 3-Tesla. Under certain conditions significant heating may occur, resulting in patient burns. Furthermore, artifacts can be substantial and prevent the diagnostic use of MRI. Therefore, the objective of this investigation was to evaluate MRI issues for 4 different cervical external immobilization devices at 3-Tesla. SUMMARY OF BACKGROUND DATA: Excessive heating and substantial artifacts are 2 potential complications associated with performing MRI at 3-Tesla in patients with cervical external immobilization devices. Using ex vivo testing techniques, MRI-related heating and artifacts were evaluated for 4 different cervical devices during MRI at 3-Tesla. METHODS: Four cervical external immobilization devices (Generation 80, Resolve Ring and Superstructure, Resolve Ring and Jerome Vest/Jerome Superstructure, and the V1 Halo System; Ossur Americas, Aliso Viejo, CA) underwent MRI testing at 3-Tesla. All devices were made from nonmetallic or nonmagnetic materials. Heating was determined using a gelled-saline-filled skull phantom with fluoroptic thermometry probes attached to the skull pins. MRI was performed at 3-Tesla, using a high level of RF energy. Artifacts were assessed at 3-Tesla, using standard cervical imaging techniques. RESULTS: The Generation 80 and V1 Halo devices exhibited substantial temperature rises (11.6 degrees C and 8.5 degrees C, respectively), with "sparking" evident for the Generation 80 during the MRI procedure. Artifacts were problematic for these devices, as well. By comparison, the 2 Resolve Ring-based cervical external immobilization devices showed little or no heating (< or = 0.6 degrees C) and the artifacts were acceptable for diagnostic MRI examinations. CONCLUSION: The low degree of heating and minor artifacts associated with the Resolve-based cervical external immobilization devices indicated that these products are safe for patients undergoing MRI at 3-Tesla.