Needs and Perceptions of Patients With Dystonia During the COVID-19 Pandemic: A Qualitative Framework Analysis of Survey Responses From Italy

Introduction:The COVID-19 pandemic and its countermeasures have created changes in both life and healthcare. With the prioritization of COVID-19-related management, the risks and experiences of patients suffering from rare conditions, such as dystonia, during the pandemic remain understudied. Materials and MethodsUsing a framework analysis of a nationwide qualitative online survey, we sought to explore the perspectives of patients with dystonia on their clinical assistance and possible unmet needs during the first pandemic wave. An online survey consisting of 37 items (such as demographic characteristics, dystonia-related features, neurological service provision, therapeutic relationship with the neurologist, perceptions related to virus infection, perceptions about healthcare-related needs, work-related questions, requesting information, and seeking support during the pandemic) was carried out using both close and open-ended questions. ResultsResponses from 62 participants were collected, with most of them from the red zones in Italy, where they were confined indoors. Social isolation was a relevant stressor. Motor and non-motor symptoms increased with detrimental consequences for patients' job and daily functionality. Outpatient clinics and rehabilitation sessions were temporarily shut down, and even telephone/mail support was sparse. Despite efforts, patients felt alone in dealing with dystonia. ConclusionThe first wave of the pandemic and its related restrictions had detrimental consequences for people living with dystonia, and their relevant needs remained unmet. These findings may contribute to implementing remedial healthcare provisions in this pandemic or in future pandemics

Italian health professionals on the mandatory COVID-19 vaccine: An online cross-sectional survey

Italy was the first country in Europe to make vaccination against COVID-19 mandatory for healthcare professionals by imposing restrictions in cases of non-compliance. This study investigates the opinions of the Italian healthcare professionals' categories affected by the regulation. We performed a qualitative online survey: the questionnaire comprised both close- and open-ended questions. The final dataset included n = 4,677 valid responses. Responses to closed-ended questions were analyzed with descriptive statistics. The framework method was applied for analyzing the open-ended questions. The sample spanned all health professions subject to compulsory vaccination, with a prevalence of physicians (43.8%) and nurses (26.3%). The vaccine adhesion before the introduction of the obligation was substantial. 10.4% declared not to have adhered to the vaccination proposal. Thirty-five percent of HPs who opted not to get vaccinated said they experienced consequences related to their choice. The trust in the vaccine seems slightly cracked, demonstrating overall vaccine confidence among professionals. Nonetheless, our results show that whether (or not) professionals adhere to vaccination is not a reliable indicator of consent to how it was achieved. There are criticisms about the lawfulness of the obligation. The data show a great variety of participants interpreting their roles concerning public and individual ethics. The scientific evidence motivates ethics-related decisions-the epidemic of confusing and incorrect information affected professionals. The Law triggered an increased disaffection with the health system and conflicts between professionals. Dealing with the working climate should be a commitment to assume soon

Effectiveness of patients’ involvement in a medical and nursing pain education programme: a protocol for an open-label randomised controlled trial including qualitative data

Introduction Pain is a multidimensional experience that varies among individuals and has a significant impact on their health. A biopsychosocial approach is recommended for effective pain management; however, health professionals’ education is weak on this issue. Patient involvement is a promising didactic methodology in developing a more holistic perspective, however there is a lack of reliable evidence on this topic. The aim of the present study is to evaluate the effectiveness of patient involvement in pain education in undergraduate medicine and nursing students. Methods and analysis An open-label randomised controlled trial including qualitative data will be conducted. After an introductory lesson, each student will be randomly assigned to the intervention group, which includes an educational session conducted by a patient–partner along with an educator, or to the control group in which the session is exclusively conducted by an educator. Both sessions will be carried out according to the Case-Based Learning approach. Primary outcomes will be students’ knowledge, attitudes, opinions and beliefs about pain management, whereas the secondary outcome will be students’ satisfaction. The Pain Knowledge and Attitudes (PAK) and Chronic Pain Myth Scale (CPMS) will be administered preintervention and postintervention to measure primary outcomes. Students’ satisfaction will be measured by a questionnaire at the end of the session. Two focus groups will be conducted to evaluate non-quantifiable aspects of learning. Ethics and dissemination The protocol of this study was approved by the independent Area Vasta Emilia Nord ethics committee

Factors involved in therapeutic discordance in physician and patient relationship: a grounded theory study

Rationale: For patients, therapy has a stronger meaning than prescriptions. Context background: 50% of patients do not use their medications as recommended. This entails a significant increase in costs for health services, premature deaths, and hospitalizations. Research question: The research question explored “What factors contribute to the construction of therapeutic discordance between physician and patient in relation to the loss of meaning of a pharmacological treatment?”. Method: We adopted Charmaz's constructivist Grounded Theory, involving 42 participants (16 patients, 5 relatives, and 21 health care professionals). Results: The core category emerged is called "neglecting the relationship", and allows to understand and focus the main categories (non-negotiating contract; substituting the other; avoiding the conflict and being emotionally involved) in a conceptual framework. Conclusions: Therapeutic discordance theory is part of the concordance debate, highlighting the implicated factors that bring to light a negative result of the relational process between doctor and patient. Recommendations: The emerged knowledge of the factors involved in the therapeutic discordance can be useful to spread in training courses for physicians and medical students, a category that sees in training programs a strongly biomedical, centred imprint on illness, and often not centred on the person, family, and society

Relational dynamics involved in therapeutic discordance among prescribers and patients: a grounded theory study

OBJECTIVE: No studies have explored the negative process of concordance: discordance in prescribing-medication-taking. This study provides a deeper understanding of discordance as a co-constructed process among patients and prescribers. METHODS: To explore the question "what psychological and relational processes are involved when therapeutic discordance among prescribers and receivers occurs?" a constructivist Grounded Theory study was carried out through semi-structured interviews with patients and their medical doctors. RESULTS: The final sample of our study was composed of 29 participants: 16 receivers and 13 prescribers. "Neglecting the relationship", the core category, shapes the therapeutic discordance and connects three main conceptual phases: signing a non-negotiating contract, acting alone, and establishing a superficial relationship. CONCLUSION: Our grounded theory conceptualization contributes to the concordance-related debate by evidencing the processes among prescribers and receivers in interwoven actions. It offers another dimension to how notions of compliance, adherence and concordance have been theorized to date. PRACTICE IMPLICATIONS: More than one interaction with receivers is recommended. If there are hints that conflict potentially is compromising the relationship, prescribers should involve intermediaries. Setting aside for a moment, evidence-based justification for treatments and trying to understand prescribers' motivations may boost a positive change