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)—an uncommon, life-limiting neurological condition for which there are few treatments—may be challenged by patients’ symptoms including cognitive and behavioral impairments. Is patient-centered care—which incorporates the values, experiences and expertise of patients and their caregivers—feasible or achievable? Uncovering patients’ and their caregivers’ experiences of living with DM1, their health care expectations, and their health care providers’ (HCP) perspectives about care is essential for examining patient-centered care in this population. Therefore, the purpose of this research is to: (1) add patients’ and caregivers’ voices to the literature, (2) explore on-going care provision for individuals with DM1, and (3) probe whether patients’ and caregivers’ 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 theory—qualitative methodologies that prioritize participants’ experiences and recognize that researchers and participants co-construct the data—were used to explore patients’, caregivers’ and HCPs’ experiences about living with — or caring for individuals—with 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 participants’ described that DM1 symptoms—particularly fatigue and weakness— impacted their daily activities and sense of self; however, participants were resilient and problem-solved coping strategies. Patient and caregiver participants’ 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 ‘safe place’ 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 Huntington’s disease and young-onset Parkinson’s 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

Affronter des enjeux clés liés à l’évaluation du rôle de promoteur de la santé

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. It’s 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 référentiel CanMEDS établisse les normes en matière de formation et de pratique médicale au Canada, la compétence de promotion de la santé (PS) ne semble pas peser lourd aux étapes décisives du continuum de la formation médicale. En l’absence de facteurs incitatifs, les programmes de formation sont peu enclins à intégrer des pratiques solides d’enseignement et d’évaluation en matière de PS. Un système de soins de santé marqué par l’iniquité appelle pourtant des efforts de sensibilisation. En adoptant le référentiel CanMEDS, le milieu canadien de l’éducation médicale a reconnu que la PS est nécessaire à la pratique compétente de la médecine. Il est temps que cet engagement soit traduit en actions concrètes. Méthodes : Employant une méthode d’analyse critique, nous avons examiné les écrits qui peuvent éclairer les obstacles à l’évaluation sérieuse de la PS et avons formulé des recommandations. L’examen a été effectué de manière itérative en cinq étapes : définition de la question de recherche, recherche documentaire, évaluation et sélection des sources, et analyse des résultats. Résultats : L’amélioration de la formation en matière de PS suppose, entre autres, que le milieu de l’éducation médicale s’attèle aux enjeux clés suivants : 1) l’élaborer une vision commune de la PS, 2) concevoir, mettre en œuvre et intégrer des programmes d’études évolutifs et 3) considérer les répercussions éthiques de l’évaluation d’un rôle qui comporte une part de risque. Conclusion : Le manque de visibilité et d’attention accordées à la PS dans la formation amène de nombreux apprenants à se demander si leur compétence en la matière compte vraiment. Nous estimons que la promotion de la santé est au cœur des soins centrés sur le patient. Nous lançons donc un appel à redoubler nos efforts collectifs pour faire passer la PS du statut de simple aspiration et de valeur théorique à celui d’une valeur ayant une pertinence et des incidences concrètes

The patients’ perspective: Results of a survey assessing knowledge about and attitudes toward depression in PD

We report results of a survey assessing patients’ knowledge about and attitudes towards depression in Parkinson’s 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 “normal reaction” 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. It’s 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 référentiel CanMEDS établisse les normes en matière de formation et de pratique médicale au Canada, la compétence de promotion de la santé (PS) ne semble pas peser lourd aux étapes décisives du continuum de la formation médicale. En l’absence de facteurs incitatifs, les programmes de formation sont peu enclins à intégrer des pratiques solides d’enseignement et d’évaluation en matière de PS. Un système de soins de santé marqué par l’iniquité appelle pourtant des efforts de sensibilisation. En adoptant le référentiel CanMEDS, le milieu canadien de l’éducation médicale a reconnu que la PS est nécessaire à la pratique compétente de la médecine. Il est temps que cet engagement soit traduit en actions concrètes.Méthodes : Employant une méthode d’analyse critique, nous avons examiné les écrits qui peuvent éclairer les obstacles à l’évaluation sérieuse de la PS et avons formulé des recommandations. L’examen a été effectué de manière itérative en cinq étapes : définition de la question de recherche, recherche documentaire, évaluation et sélection des sources, et analyse des résultats.Résultats : L’amélioration de la formation en matière de PS suppose, entre autres, que le milieu de l’éducation médicale s’attèle aux enjeux clés suivants : 1) l’élaborer une vision commune de la PS, 2) concevoir, mettre en œuvre et intégrer des programmes d’études évolutifs et 3) considérer les répercussions éthiques de l’évaluation d’un rôle qui comporte une part de risque.Conclusion : Le manque de visibilité et d’attention accordées à la PS dans la formation amène de nombreux apprenants à se demander si leur compétence en la matière compte vraiment. Nous estimons que la promotion de la santé est au cœur des soins centrés sur le patient. Nous lançons donc un appel à redoubler nos efforts collectifs pour faire passer la PS du statut de simple aspiration et de valeur théorique à celui d’une valeur ayant une pertinence et des incidences concrètes

"Oh my God, I can't handle this!': trainees' emotional responses to complex situations

ContextDealing with emotions is critical for medical trainees' professional development. Taking a sociocultural and narrative approach to understanding emotions, we studied complex clinical situations as a specific context in which emotions are evoked and influenced by the social environment. We sought to understand how medical trainees respond to emotions that arise in those situations. MethodsIn an international constructivist grounded theory study, 29 trainees drew two rich pictures of complex clinical situations, one exciting and one frustrating. Rich pictures are visual representations that capture participants' perceptions about the people, situations and factors that create clinical complexity. These pictures were used to guide semi-structured, individual interviews. We analysed visual materials and interviews in an integrated way, starting with looking at the drawings, doing a gallery walk', and using the interviews to inform the aesthetic analysis. ResultsParticipants' drawings depicted a range of personal emotions in response to complexity, and disclosed unsettling feelings and behaviours that might be considered unprofessional. When trainees felt confident, they were actively participating, engaged in creative problem-solving strategies, and emphasised their personal involvement. When trainees felt the situation was beyond their control, they described how they were running away from the situation, hiding themselves behind others or distancing themselves from patients or families. ConclusionsA sense of control seems to be a key factor influencing trainees' emotional and behavioural responses to complexity. This is problematic, as complex situations are by their nature emergent and dynamic, which limits possibilities for control. Following a social performative approach to emotions, we should help students understand that feeling out of control is an inherent property of participating in complex clinical situations, and, by extension, that it is not something they will grow out of' with expertise