RESUMEN
OBJECTIVES: Women are underrepresented in most HIV clinical trials in Western countries, but their participation remains crucial as the lack of information on sex- and gender-specific effects may hinder the safety and efficacy of antiretroviral treatments. The aim of this study was to identify barriers to and facilitators of women's participation in HIV clinical trials in Switzerland. METHODS: We conducted semi-structured interviews among 20 women with HIV to explore factors associated with non-participation in clinical trials. The interviewer presented to participants a clinical trial's description and discussed it with them. Lexicometric analysis on transcribed interviews identified three themes and eight sub-themes related to the pros and cons of participation in HIV clinical trials. RESULTS: Participants evoked mainly decision-making drivers, concerns for women living with HIV and treatment side-effects. They highlighted the need for extensive information provided by trusted healthcare professionals on the research process as central to the decision to enrol in HIV clinical trials. Familial responsibilities were clearly identified as barriers to their participation, but not pregnancy. Additional preoccupations were other health concerns and comorbidities and the consequences of stopping ongoing antiretroviral treatments. CONCLUSIONS: To overcome the barriers to the participation of women living with HIV in clinical research in Western countries, healthcare professionals and researchers should increase women's research literacy by involving them in the study design and by tailoring clinical trials to their social roles and health concerns. Trust in professionals is a facilitator of enrolment of women living with HIV that should be maintained.
Asunto(s)
Infecciones por VIH , Antirretrovirales/uso terapéutico , Femenino , Infecciones por VIH/tratamiento farmacológico , Personal de Salud , Humanos , Embarazo , Investigación Cualitativa , SuizaRESUMEN
During the first wave of Covid-19, hospital professionals had to quickly adapt their practices and introduce several changes in the organization of work and patient care. In this study, we were interested in how these changes were experienced by the professionals of 11 hospitals in French-speaking Switzerland. The results underline the importance of support between colleagues and between services in this crisis, which seems to have been marked by an improvement in interprofessional coordination and collaboration. The support of direct managers also seems to have been crucial but largely dependent on their leadership skills. Respondents emphasized the need for a transparent institutional communication.
Durant la première vague de Covid-19, les professionnel·le·s hospitalier·ère·s ont dû rapidement adapter leur façon de travailler et introduire de nombreux changements dans l'organisation du travail et la prise en charge des patient·e·s. Dans cette étude, nous nous sommes intéressées à la façon dont ces changements avaient été vécus par les professionnel·le·s de 11 hôpitaux romands. Les résultats soulignent l'importance de l'entraide entre collègues et entre services, dans cette situation de crise qui semble avoir été marquée par une amélioration de la coordination et de la collaboration interprofessionnelle. Le soutien des responsables direct·e·s semble également avoir été crucial mais largement dépendant du leadership des responsables. Les répondant·e·s ont souligné la nécessité d'avoir une communication institutionnelle transparente.
Asunto(s)
COVID-19 , Hospitales , Humanos , Liderazgo , SARS-CoV-2 , SuizaRESUMEN
BACKGROUND: Patient experience surveys are increasingly conducted in cancer care as they provide important results to consider in future development of cancer care and health policymaking. These surveys usually include closed-ended questions (patient-reported experience measures (PREMs)) and space for free-text comments, but published results are mostly based on PREMs. We aimed to identify the underlying themes of patients' experiences as shared in their own words in the Swiss Cancer Patient Experiences (SCAPE) survey and compare these themes with those assessed with PREMs to investigate how the textual analysis of free-text comments contributes to the understanding of patients' experiences of care. METHODS: SCAPE is a multicenter cross-sectional survey that was conducted between October 2018 and March 2019 in French-speaking parts of Switzerland. Patients were invited to rate their care in 65 closed-ended questions (PREMs) and to add free-text comments regarding their cancer-related experiences at the end of the survey. We conducted computer-assisted textual analysis using the IRaMuTeQ software on the comments provided by 31% (n = 844) of SCAPE survey respondents (n = 2755). RESULTS: We identified five main thematic classes, two of which consisting of a detailed description of 'cancer care pathways'. The remaining three classes were related to 'medical care', 'gratitude and praise', and the way patients lived with cancer ('cancer and me'). Further analysis of this last class showed that patients' comments related to the following themes: 'initial shock', 'loneliness', 'understanding and acceptance', 'cancer repercussions', and 'information and communication'. While closed-ended questions related mainly to factual aspects of experiences of care, free-text comments related primarily to the personal and emotional experiences and consequences of having cancer and receiving care. CONCLUSIONS: A computer-assisted textual analysis of free-text in our patient survey allowed a time-efficient classification of free-text data that provided insights on the personal experience of living with cancer and additional information on patient experiences that had not been collected with the closed-ended questions, underlining the importance of offering space for comments. Such results can be useful to inform questionnaire development, provide feedback to professional teams, and guide patient-centered initiatives to improve the quality and safety of cancer care.
Asunto(s)
Comunicación , Encuestas de Atención de la Salud , Lenguaje , Satisfacción del Paciente , Programas Informáticos , Estudios Transversales , Etnicidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/psicología , Satisfacción del Paciente/estadística & datos numéricos , SuizaRESUMEN
OBJECTIVE: We aimed to identify the main barriers to integrated care (IC) as reported by healthcare stakeholders from various linguistic regions and health system specificities, according to their reality of practice. METHODS: Information was gathered through an open-ended question from a national survey conducted in Switzerland in 2019. Responses were analysed qualitatively with the IRaMuTeQ software. RESULTS: Answers from 410 respondents were obtained. Respondents reported barriers at two levels: the system and professional level. Threat to financial benefits, concerns for patient data sharing and tensions between quality of care and benefits for patients versus costs were mentioned at the professional level, in their activity and in patient care. At the system level, limitations at the political level due to federalism and the lack of support and training for professionals were important barriers, in addition to the lack of recognition and compensation for professionals and the fragmented functioning of the health care system. CONCLUSION: Our study underlines the importance of implementing innovative funding strategies and reimbursement schemes, as well as political willingness to move towards IC. The alignment between federal policies and cantonal specificities also appears as necessary to achieve involvement of professionals, promote integration of services and coordination of professionals for continuous and efficient care.
Asunto(s)
Prestación Integrada de Atención de Salud , Políticas , Humanos , Encuestas y Cuestionarios , SuizaRESUMEN
BACKGROUND: Recent advances made in cell and gene therapies for cancer suggest that they represent plausible strategies to cure HIV. However, the health risks and constraints associated with these therapies require a deeper understanding of the expectations of such treatments among people living with HIV (PLWH). METHODS: We conducted 15 semistructured in-depth interviews among patients from 2 HIV units in Switzerland. After a conversation about their perceptions of research on HIV therapies, participants were provided with a trial description using a gene-modified cell therapy as a potentially curative approach. They were invited to discuss how they might consider participation in the trial. Content analysis was performed to identify core themes. RESULTS: Participants perceived the trial as burdensome and uncertain. Most were aware that cure was not guaranteed, and 6 of the 15 considered that they would participate. Two main concerns were expressed about potential participation: (1) the impact on the professional life and fear to be stigmatized because of this and (2) the fact that stopping antiretroviral treatment would challenge the balance currently achieved in their lives. The decision to participate would depend on their understanding of the trial, the availability of sufficient information, and the relationship with health care professionals. CONCLUSION: Involving PLWH in early stages of research would be crucial to improve their understanding of gene-modified cell therapies. It could also help adapt trials to address key factors, including the anticipation of stigma, which may discourage PLWH from participating in treatment research.