This is the question that has driven the first ethnographic and medical study with Covid-19 patients that are isolated in their homes has been done so far to our best knowledge (April 12th, 2020) and that has as an outcome the first Covid-19 patient journey map. It is true that in the US there are big data studies on Covid patient experience based on press comments, there is work done in China on the psychological and social impact of confinement, as well as population ethnographies in New Orleans on isolated population in general. There is also a global Covid-19 patient journey developed by our parent organization in Brazil, Patient Centricity Consulting. But to our knowledge there is no study based on first hand patient experienced.
This work has been promoted in a collaborative way by the Institute for Patient Experience (IEXP), The Innovation Support Unit of La Princesa Hospital (Madrid) as well as the Spanish Society for Healthcare Quality. While the research is published, the results are open to all healthcare organizations that need it.
Materials and methods
15 semi structured interviews with Covid-19 patients isolated in their homes in Spain were conducted (a broader sample is being interviewed now to enlarge data). Patients were recruited by snowball sampling. The urgency of the situation made it advisable to use broad inclusion criteria regarding age, sex and other sociodemographic variables of Covid-19 that were isolated at their homes; this means, out of healthcare institutions.
The journey of the patient that has been infected by the coronavirus in Spain is full of uncertainties due to the little knowledge about the pathology and its treatments, as well as due to the saturation of the healthcare systems and of healthcare professionals. The journey does not start with symptoms, but with the relentless information flow through different channels such as mass media, social networks, personal and neighborhood relationships. In a certain moment the patient makes an association between first symptoms (lack of taste and smell, headaches, fever, cough) and the possibility to have been infected by the coronavirus. This leads to a check of the information available in media and internet and to ask family and friends. Patients try also to remember what they did, how they could have been infected and whom they might have infected too. Many patients avoid visiting the doctor for good citizenship reasons in order not to add more trouble to the saturated system (and may be also for fear to become really infected) and they use then the call centers established by the healthcare authorities.
There are two pathways to get a diagnosis: the mentioned telephone service and the hospital. Telephone service is associated to a cold treatment, long waiting times, the perception that physicians do not control the knowledge about the disease; patients feel they do not get all the information they need and they have also the feeling that the healthcare staff does not really care. This is the experience as narrated by patients and it has a possible explanation on the healthcare professional’s side in the saturation, the urgency this services have been organized and the fact that it is a new situation for them, what prevents a good planning, as well as lack of resources and information.
When patients use hospitals there is indeed a perception that there is a concern about the pandemic – contrary to what is perceived about call centers-, but not a concern about the patient as a person.
Whether the diagnosis is done by the telephone service or in hospitals, patients perceive that isolation guidelines are little and difficult to apply in practice. This tension between medical prescription and everyday life appears almost in all IEXP projects 8COPD, cancer, thrombosis, stroke, etc.) and is related to a lack in communication skills by healthcare professionals, sociocultural gaps and uneven knowledge. But also, to hospital staff saturation. This tension is mostly a main cause for lack of adherence and in the case of coronavirus, of the many interpretations patients make of what isolation means.
These different interpretations are applied for example to the time patients calculate they must be isolated, the social distance behaviours, if isolation should be strict or relative, hygienization norms, etc. There is no standard and each individual establish different practices for these four patterns, making thus dozens of combinations possible.
Difficulties of isolation are determined by the number and kind of persons patients live with. People living alone have few difficulties. Those living in a family develop different strategies and those living with dependent and elderly persons face grate problems and they fear as well to infect them causing their death.
Patients go through different phases of improvement and relapse. During these phases telephone follow up is perceived as very improvable regarding information quality and treatment, as well as a perception of “neglect”. Again, these are patient perceptions and they do not necessarily reflect all sides of reality.
The emotional journey
This journey from overwhelming corona information up to discharge is emotionally very hard for patients and families. Patients’ emotions are related to three factors: the disease itself and its consequences, the relationship with family members, the relationship with healthcare professionals and the relationship with the healthcare system as a different entity than the professionals who work for it.
Emotions are not only extraordinary intense and different, but the state of mind has various highs and downs. The deepest of all downs is the moment of diagnosis, where regarding the disease fear and anxiety emerge. But regarding telephone assistance, distrust is the dominant emotion against professionals and the system. Yet, in hospitals, the healthcare professionals’ empathy and treatment produce security and a feeling of control.
The needs of isolated Covid-19 patients at home can be clustered in five groups: communication and information, healthcare support, emotional support, logistic support as well as treatment and humanization.
This research provides much key information in order to co-create and co-design quick and effective solutions for isolated Covid-19 patients. On April 13th and 14th we will hold two online participatory healthcare workshops (a powerful methodology developed by IEXP that integrates advisory board, design thinking and participatory action research) in order to design support actions on the basis of this empirical evidence.
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