17 research outputs found
Are Patients at the Centre of Care?: A Qualitative Exploration of Myotonic Dystrophy Type 1 (DM1)
Health care for individuals living with myotonic dystrophy (DM1)âan uncommon, life-limiting neurological condition for which there are few treatmentsâmay be challenged by patientsâ symptoms including cognitive and behavioral impairments. Is patient-centered careâwhich incorporates the values, experiences and expertise of patients and their caregiversâfeasible or achievable? Uncovering patientsâ and their caregiversâ experiences of living with DM1, their health care expectations, and their health care providersâ (HCP) perspectives about care is essential for examining patient-centered care in this population. Therefore, the purpose of this research is to: (1) add patientsâ and caregiversâ voices to the literature, (2) explore on-going care provision for individuals with DM1, and (3) probe whether patientsâ and caregiversâ needs are being met.
Forty-eight participants were purposively sampled from one academic centre in Ontario, Canada to participate in three studies. Phenomenology, photovoice and grounded theoryâqualitative methodologies that prioritize participantsâ experiences and recognize that researchers and participants co-construct the dataâwere used to explore patientsâ, caregiversâ and HCPsâ experiences about living with â or caring for individualsâwith DM1. Semi-structured interviews were the primary data collection method; focus groups and photographs were also used in the photovoice study. Data analysis varied by methodology.
Patient and caregiver participantsâ described that DM1 symptomsâparticularly fatigue and weaknessâ impacted their daily activities and sense of self; however, participants were resilient and problem-solved coping strategies. Patient and caregiver participantsâ motivations for clinic attendance evolved along the disease trajectory, but most participants perceived that clinic attendance had tangible benefits. HCPs described that their main role was to provide hope for patients and their families. Most importantly, this research revealed that patient, caregiver and HCP participants described clinic as a âsafe placeâ for patients and caregivers to be understood, and to be empowered to take a proactive role in health care.
DM1 participants derived a therapeutic benefit from attending clinic despite providers concerns that patient-centered care was challenged by complex biopsychosocial issues. This research raises questions about whether a physician-led model is the most efficient mode of care provision, or whether other models warrant investigation
Challenges & Strategies for Conducting Qualitative Research with Persons Diagnosed with Rare Movement Disorders
Unique features of Huntingtonâs disease and young-onset Parkinsonâs disease, both neurodegenerative movement disorders, can pose challenges for conducting qualitative research. From the perspectives of two doctoral candidates conducting research with these groups, a number of challenges are presented and discussed alongside strategies for managing such challenges. Challenges are organized according to physical (e.g., movement), psychological (e.g., cognition) and social (e.g., speech impairment) aspects of these diseases. The strategies presented emphasize the importance of ethical reasoning in situations that can arise, as well as the relationships developed with the research participants. Author transparency and ethical reasoning are both important in conducting quality qualitative research. It is hoped that presenting these challenges and strategies will promote greater dialogue on such issues, and help researchers enable more people with rare movement disorders to participate in qualitative research
Why open-ended survey questions are unlikely to support rigorous qualitative insights
Health professions education researchers are increasingly relying on a combination of quantitative and qualitative research methods to explore complex questions in the field. This important and necessary development, however, creates new methodological challenges that can affect both the rigor of the research process and the quality of the findings. One example is qualitatively analyzing free-text responses to survey or assessment instrument questions. In this Invited Commentary, the authors explain why analysis of such responses rarely meets the bar for rigorous qualitative research. While the authors do not discount the potential for free-text responses to enhance quantitative findings or to inspire new research questions, they caution that these responses rarely produce data rich enough to generate robust, stand-alone insights. The authors consider exemplars from health professions education research and propose strategies for treating free-text responses appropriately
Affronter des enjeux clĂ©s liĂ©s Ă lâĂ©valuation du rĂŽle de promoteur de la santĂ©
Introduction: Although the CanMEDS framework sets the standard for Canadian training, health advocacy competence does not appear to factor heavily into high stakes assessment decisions. Without forces motivating uptake, there is little movement by educational programs to integrate robust advocacy teaching and assessment practices. However, by adopting CanMEDS, the Canadian medical education community endorses that advocacy is required for competent medical practice. Itâs time to back up that endorsement with meaningful action. Our purpose was to aid this work by answering the key questions that continue to challenge training for this intrinsic physician role.
Methods: We used a critical review methodology to both examine literature relevant to the complexities impeding robust advocacy assessment, and develop recommendations. Our review moved iteratively through five phases: focusing the question, searching the literature, appraising and selecting sources, and analyzing results.
Results: Improving advocacy training relies, in part, on the medical education community developing a shared vision of the Health Advocate (HA) role, designing, implementing, and integrating developmentally appropriate curricula, and considering ethical implications of assessing a role that may be risky to enact.
Conclusion: Changes to assessment could be a key driver of curricular change for the HA role, provided implementation timelines and resources are sufficient to make necessary changes meaningful. To truly be meaningful, however, advocacy first needs to be perceived as valuable. Our recommendations are intended as a roadmap for transforming advocacy from a theoretical and aspirational value into one viewed as having both practical relevance and consequential implications. Introduction : Bien que le rĂ©fĂ©rentiel CanMEDS Ă©tablisse les normes en matiĂšre de formation et de pratique mĂ©dicale au Canada, la compĂ©tence de promotion de la santĂ© (PS) ne semble pas peser lourd aux Ă©tapes dĂ©cisives du continuum de la formation mĂ©dicale. En lâabsence de facteurs incitatifs, les programmes de formation sont peu enclins Ă intĂ©grer des pratiques solides dâenseignement et dâĂ©valuation en matiĂšre de PS. Un systĂšme de soins de santĂ© marquĂ© par lâiniquitĂ© appelle pourtant des efforts de sensibilisation. En adoptant le rĂ©fĂ©rentiel CanMEDS, le milieu canadien de lâĂ©ducation mĂ©dicale a reconnu que la PS est nĂ©cessaire Ă la pratique compĂ©tente de la mĂ©decine. Il est temps que cet engagement soit traduit en actions concrĂštes.
MĂ©thodes : Employant une mĂ©thode dâanalyse critique, nous avons examinĂ© les Ă©crits qui peuvent Ă©clairer les obstacles Ă lâĂ©valuation sĂ©rieuse de la PS et avons formulĂ© des recommandations. Lâexamen a Ă©tĂ© effectuĂ© de maniĂšre itĂ©rative en cinq Ă©tapes : dĂ©finition de la question de recherche, recherche documentaire, Ă©valuation et sĂ©lection des sources, et analyse des rĂ©sultats.
RĂ©sultats : LâamĂ©lioration de la formation en matiĂšre de PS suppose, entre autres, que le milieu de lâĂ©ducation mĂ©dicale sâattĂšle aux enjeux clĂ©s suivants : 1) lâĂ©laborer une vision commune de la PS, 2) concevoir, mettre en Ćuvre et intĂ©grer des programmes dâĂ©tudes Ă©volutifs et 3) considĂ©rer les rĂ©percussions Ă©thiques de lâĂ©valuation dâun rĂŽle qui comporte une part de risque.
Conclusion : Le manque de visibilitĂ© et dâattention accordĂ©es Ă la PS dans la formation amĂšne de nombreux apprenants Ă se demander si leur compĂ©tence en la matiĂšre compte vraiment. Nous estimons que la promotion de la santĂ© est au cĆur des soins centrĂ©s sur le patient. Nous lançons donc un appel Ă redoubler nos efforts collectifs pour faire passer la PS du statut de simple aspiration et de valeur thĂ©orique Ă celui dâune valeur ayant une pertinence et des incidences concrĂštes
The patientsâ perspective: Results of a survey assessing knowledge about and attitudes toward depression in PD
We report results of a survey assessing patientsâ knowledge about and attitudes towards depression in Parkinsonâs disease (PD). 345 patients from 8 tertiary care centers responded (43% response rate). Overall, patients were relatively knowledgeable about depression and its occurrence in PD. However, many patients believed that depression is a normal reaction to the illness. While many respondents would be reluctant to initiate a discussion of depression during a clinical evaluation, most would feel comfortable talking about depression with their physician if he or she asked them questions about their mood. Based on the results of this survey, we recommend the following approach for physicians: (1) inform PD patients that, although a frequent occurrence, depression need not be accepted as a ânormal reactionâ to PD; and (2) routinely inquire about depressive symptoms rather than waiting for the patient to spontaneously report them
Grappling with key questions about assessment of the Health Advocate role
Introduction: Although the CanMEDS framework sets the standard for Canadian training, health advocacy competence does not appear to factor heavily into high stakes assessment decisions. Without forces motivating uptake, there is little movement by educational programs to integrate robust advocacy teaching and assessment practices. However, by adopting CanMEDS, the Canadian medical education community endorses that advocacy is required for competent medical practice. Itâs time to back up that endorsement with meaningful action. Our purpose was to aid this work by answering the key questions that continue to challenge training for this intrinsic physician role.Methods: We used a critical review methodology to both examine literature relevant to the complexities impeding robust advocacy assessment, and develop recommendations. Our review moved iteratively through five phases: focusing the question, searching the literature, appraising and selecting sources, and analyzing results.Results: Improving advocacy training relies, in part, on the medical education community developing a shared vision of the Health Advocate (HA) role, designing, implementing, and integrating developmentally appropriate curricula, and considering ethical implications of assessing a role that may be risky to enact.Conclusion: Changes to assessment could be a key driver of curricular change for the HA role, provided implementation timelines and resources are sufficient to make necessary changes meaningful. To truly be meaningful, however, advocacy first needs to be perceived as valuable. Our recommendations are intended as a roadmap for transforming advocacy from a theoretical and aspirational value into one viewed as having both practical relevance and consequential implications.Introduction : Bien que le rĂ©fĂ©rentiel CanMEDS Ă©tablisse les normes en matiĂšre de formation et de pratique mĂ©dicale au Canada, la compĂ©tence de promotion de la santĂ© (PS) ne semble pas peser lourd aux Ă©tapes dĂ©cisives du continuum de la formation mĂ©dicale. En lâabsence de facteurs incitatifs, les programmes de formation sont peu enclins Ă intĂ©grer des pratiques solides dâenseignement et dâĂ©valuation en matiĂšre de PS. Un systĂšme de soins de santĂ© marquĂ© par lâiniquitĂ© appelle pourtant des efforts de sensibilisation. En adoptant le rĂ©fĂ©rentiel CanMEDS, le milieu canadien de lâĂ©ducation mĂ©dicale a reconnu que la PS est nĂ©cessaire Ă la pratique compĂ©tente de la mĂ©decine. Il est temps que cet engagement soit traduit en actions concrĂštes.MĂ©thodes : Employant une mĂ©thode dâanalyse critique, nous avons examinĂ© les Ă©crits qui peuvent Ă©clairer les obstacles Ă lâĂ©valuation sĂ©rieuse de la PS et avons formulĂ© des recommandations. Lâexamen a Ă©tĂ© effectuĂ© de maniĂšre itĂ©rative en cinq Ă©tapes : dĂ©finition de la question de recherche, recherche documentaire, Ă©valuation et sĂ©lection des sources, et analyse des rĂ©sultats.RĂ©sultats : LâamĂ©lioration de la formation en matiĂšre de PS suppose, entre autres, que le milieu de lâĂ©ducation mĂ©dicale sâattĂšle aux enjeux clĂ©s suivants : 1) lâĂ©laborer une vision commune de la PS, 2) concevoir, mettre en Ćuvre et intĂ©grer des programmes dâĂ©tudes Ă©volutifs et 3) considĂ©rer les rĂ©percussions Ă©thiques de lâĂ©valuation dâun rĂŽle qui comporte une part de risque.Conclusion : Le manque de visibilitĂ© et dâattention accordĂ©es Ă la PS dans la formation amĂšne de nombreux apprenants Ă se demander si leur compĂ©tence en la matiĂšre compte vraiment. Nous estimons que la promotion de la santĂ© est au cĆur des soins centrĂ©s sur le patient. Nous lançons donc un appel Ă redoubler nos efforts collectifs pour faire passer la PS du statut de simple aspiration et de valeur thĂ©orique Ă celui dâune valeur ayant une pertinence et des incidences concrĂštes
Illness presenteeism among physicians and trainees: Study protocol of a scoping review.
BackgroundIllness presenteeism (IP) is the phenomenon where individuals continue to work despite illness. While it has been a prevalent and longstanding issue in medicine, the recent onset of the COVID-19 pandemic and the growing movement to improve physician wellness brings renewed interest in this topic. However, there have been no comprehensive reviews on the state of literature of this topic.PurposeThe main aim of this scoping review is to explore what is known about presenteeism in physicians, residents, and medical students in order to map and summarize the literature, identify research gaps and inform future research. More specifically: How has illness presenteeism been defined, problematized or perceived? What methods and approaches have been used to study the phenomenon? Has the literature changed since the pandemic?MethodUsing the Arksey and O'Malley framework several databases will be searched by an experienced librarian. Through an iterative process, inclusion and exclusion criteria will be developed and a data extraction form refined. Data will be analyzed using quantitative and qualitative content analyses.Potential implications of resultsBy summarizing the literature on IP, this study will provide a better understanding of the IP phenomena to inform future research and potentially have implications for physician wellness and public health
Appendix A: Prisma-ScR checklist.
Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Reviews (PRISMA-ScR) Checklist. (PDF)</p