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Qualitative factors shaping MS patients' experiences of infusible disease-modifying drugs: a critical incident technique analysis.

ABSTRACT: OBJECTIVE:To explore factors shaping the experiences of patients with relapsing-remitting multiple sclerosis with infusible disease-modifying drugs in a hospital setting. DESIGN AND SETTINGS:The critical incident technique served as a framework for collecting and analysing patients' qualitative account practices involving infusible disease-modifying drugs. Data were collected through semistructured interviews and one single-case study. Participants were recruited from all five regions in Denmark. Inductive thematic analysis was used to identify and interpret factors shaping patients' infusion journey over time. PARTICIPANTS:Twenty-two patients with relapsing-remitting multiple sclerosis receiving infusion with disease-modifying drugs (natalizumab, alemtuzumab and ocrelizumab). RESULTS:Four time scenarios-preinfusion, day of infusion, long-term infusion and switch of infusion-associated with the infusion of disease-modifying drugs were analysed to reveal how different factors could both positively and negatively affect patient experience. Time taken to make the treatment decision was affected by participants' subjective perceptions of their disease activity; this may have set off a treatment dilemma in the event of a pressing need for treatment. Planning and routine made infusion practices manageable, but external and internal surroundings, including infusion room ambience and the quality of relationships with healthcare professionals and fellow patients, affected patients' cognitive state and well-being irrespective of the infusion regimen. Switching the infusion regimen can reactivate worries akin to the preinfusion scenario. CONCLUSION:This study provides novel insight into the positive and negative factors that shape patients' experience of infusion care practices. From a patient's perspective, an infusion practice is not a solitary event in time but includes planning and routine which become an integral part of their multiple sclerosis management. The quality of space and the ambience of the infusion room, combined with the relationship with healthcare professionals and fellow patients, can be a significant source of knowledge and support people with relapsing-remitting multiple sclerosis in their experience of agency in life.

SUBMITTER: Larsen JL

PROVIDER: S-EPMC7443265 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Qualitative factors shaping MS patients' experiences of infusible disease-modifying drugs: a critical incident technique analysis.

Larsen Janni Lisander JL Schäfer Jakob J Nielsen Helle Hvilsted HH Vestergaard Rasmussen Peter P

BMJ open 20200820 8

<h4>Objective</h4>To explore factors shaping the experiences of patients with relapsing-remitting multiple sclerosis with infusible disease-modifying drugs in a hospital setting.<h4>Design and settings</h4>The critical incident technique served as a framework for collecting and analysing patients' qualitative account practices involving infusible disease-modifying drugs. Data were collected through semistructured interviews and one single-case study. Participants were recruited from all five reg ...[more]

PMID: 32819993

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Project description:Since February 2020, when coronavirus disease began to spread in Italy, general practitioners (GPs) were called to manage a growing number of health situations. The challenges experienced by Italian GPs remained unrevealed. This study aimed at exploring Italian GPs' care experiences and practices associated with critical incidents during the first wave of the pandemic. A qualitative study design involving the critical incident technique through an online survey was applied. Sociodemographic data and open-ended responses were collected. While participants' characteristics were analyzed through descriptive statistics, qualitative data were thematically analyzed employing the framework method. 149 GPs responded to the survey and 99 participants completed the survey (dropout rate = 33%). Eight themes emerged indicating factors related to the organization of the healthcare system and factors related to the clinical management of patients, that were perceived as impacting on the GPs' care provision. The analysis revealed difficulties in communicating with other local services. This, together with the lack of coordination among services, was reported as a major challenge. Primary care was perceived as having been undervalued and criticalities in the organization of GP courses, led in a bureaucratic fashion, posed at risk some trainees to be infected. The digital technologies adopted for remote patient consultations were seen as useful tools for daily practice helping the GPs to stay emotionally connected with their patients. Besides, the improvement in the GP-patient relationship in terms of solidarity between patients and doctors and compliance to rules, had a positive impact. Moreover, many respondents addressed the importance of professional collaboration and teamwork, in terms of both support in practical issues (to find PPE, diagnostics and guidelines) and emotional support. At the same time, the lack of resources (e.g., PPE, swabs) and of specific guidelines and protocols impacted on the care provision. Our findings suggest that GPs in Italy are at risk of being left behind within the epidemic management. Communication and coordination among services are essential and should be substantially improved, and primary care research should be initiated to collect the context-specific evidence necessary to enhance the system's preparedness to public health emergencies and the quality of primary care services.

Project description:Women and their babies are entitled to equal access to high quality maternity care. However, when women fit into two or more categories of vulnerability they can face multiple, compound barriers to accessing and utilising services. Disabled women are up to three times more likely to experience domestic abuse than non-disabled women. Domestic abuse may compromise health service access and utilisation and disabled people in general have suboptimal access to healthcare services. Despite this, little is known about the compounding effects of disability and domestic abuse on women's access to maternity care.The aim of the study was to identify how women approach maternity care services, their expectations of services and whether they are able to get the type of care that they need and want. We conducted a qualitative, Critical Incident Technique study in Scotland. Theoretically we drew on Andersen's model of healthcare use. The model was congruent with our interest in women's intended/actual use of maternity services and the facilitators and barriers impacting their access to care. Data were generated during 2013 using one-to-one interviews.Five women took part and collectively reported 45 critical incidents relating to accessing and utilising maternity services. Mapped to the underpinning theoretical framework, our findings show how the four domains of attitudes; knowledge; social norms; and perceived control are important factors shaping maternity care experiences.Positive staff attitude and empowering women to have control over their own care is crucial in influencing women's access to and utilisation of maternity healthcare services. Moreover these are cyclical, with the consequences and outcomes of healthcare use becoming part of the enabling or disabling factors affecting future healthcare decisions.Further consideration needs to be given to the development of strategies to access and recruit women in these circumstances. This will provide an opportunity for under-represented and silenced voices to be heard.

Project description:BackgroundHealth care workers (HCWs) are at high risk of occupational injuries and approximately 10-15% of patients are affected by an adverse event during their hospital stay. There is scarce scientific literature about how HCWs manage these risks in practice and what support they need. This knowledge is needed to improve safety for patients and HCWs. This study explores HCWs' experiences of workplace incidents that led to injury or posed a risk of patient and worker injury, with focus on HCWs' emotions and actions.MethodsThis study employed a qualitative design using the critical incident technique. Semi-structured individual interviews were held with 34 HCWs from three regions in Sweden. Data were analysed using inductive category development.ResultsAltogether 71 workplace incidents were reported. The analysis of two dimensions - the emotions HCWs feel and the actions team members and managers take when a workplace incident occurs - yielded two categories each: Anxiety during the incident, Persistent distress after the incident, Team interplay for safety actions and Support and ratification from managers and colleagues. Health care workers risked their own safety and health to provide patient safety. Teamwork and trustful relationships were critical for patient and worker safety. Support and validation from colleagues and managers were important for closure; unsatisfactory manager response and insufficient opportunities to debrief the incident could lead to persistent negative emotions. Participants described insecurity and fear, sadness over being injured at work, and shame and self-regret when the patient or themselves were injured. When the workplace had not taken the expected action, they felt anger and resignation, often turning into long-term distress.ConclusionsWork situations leading to injury or risk of patient and worker injury are emotionally distressing for HCWs. Team interplay may facilitate safe and dynamic practices and help HCWs overcome negative emotions. Organizational support is imperative for individual closure. For safety in health care, employers need to develop strategies for active management of risks, avoiding injuries and providing support after an injury.

Project description:BackgroundAs realist methodology is still evolving, there is a paucity of guidance on how to conduct theory driven interviews. Realist researchers can therefore struggle to collect interview data that can make a meaningful contribution to refining their initial programme theory. Collecting data to inform realist Inital Programme Theories (IPTs) in healthcare contexts is further compounded due to the healthcare workers' busy work schedules. In this case study of team interventions in acute hospital contexts, we explore the benefits of using the Critical Incident Technique (CIT) in order to build and refine an initial programme theory. We contend that use of the CIT helps to draw on more specific experiences of "Key Informants" and therefore elicits richer and more relevant data for realist enquiry.MethodsThe five steps of the CIT were mapped against realist methods guidance and adapted into an interview framework. Specifications to identify an incident as "critical" were agreed. Probes were embedded in the interview framework to confirm, refine and/or refute previous theories. Seventeen participants were interviewed and recordings were transcribed and imported for analysis into NVivo software. Using RAMESES guidelines, Context-Mechanism-Outcomes configurations were extrapolated from a total of 31 incidents.ResultsWe found that the CIT facilitated construction of an interview format that allowed participants to reflect on specific experiences of interest. We demonstrate how the CIT strengthened initial programme theory development as it facilitated the reporting of the specifics of team interventions and the contexts and mechanisms characteristic of those experiences. As new data emerged, it was possible to evolve previous theories synthesised from the literature as well as to explore new theories.ConclusionsUtilising a CIT framework paid dividends in terms of the relevance and usefulness of the data for refining the initial programme theory. Adapting the CIT questioning technique helped to focus the participants on the specifics relating to an incident allowing the interviewers to concentrate on probes to explore theories during the interview process. The CIT interview format therefore achieved its purpose and can be adapted for use within realist methodology.

Dataset Information

Qualitative factors shaping MS patients' experiences of infusible disease-modifying drugs: a critical incident technique analysis.

Publications

Qualitative factors shaping MS patients' experiences of infusible disease-modifying drugs: a critical incident technique analysis.

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