A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: interview studies

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Not all diseases can be cured, but medication along with other measures can alleviate the symptoms. Rheumatoid arthritis is one such disease. Medicines for symptoms such as swellings and stiffness have become very effective. As a patient, you can find good ways to live with the disease, even if it can mean more or less regular contacts with healthcare (depending on how you are affected). Not only with the doctor who prescribes medication, but often with an entire healthcare team: doctor, nurse, physiotherapist, occupational therapist and counselor. There are aids that make everyday life easier, such as orthopedic shoes, splints and easier-to-grip faucets at home, and many hospitals also offer patients education about the disease and how you can live and function with it, at home as well as at work.

The symptoms vary, not only between individuals but also for the same individual over time. The need for care and support is thus individual and changing. Therefore, it is important that the interaction between patient and healthcare works efficiently and with sensitivity to the patient’s unique situation at the moment. Since patients to a great extent have to deal with their illness on their own, and over time become increasingly knowledgeable about their own disease, it is important to listen to the patient. Not only to improve the patient’s experience of healthcare, but also to ensure that individual patients receive the care and support they need at the right moment. The patient may not be part of the healthcare team, but is still one of the most important team players.

There are digital self-care applications for rheumatoid arthritis, where the patients who choose to use the tools can get advice and information about the disease, prepare for contacts with healthcare, and keep a digital logbook about their symptoms, experiences and lifestyle. Such digital self-care apps can be assumed to make patients even more knowledgeable about their own disease. The logbook contains relevant observations, which the patient can describe in the meetings with the healthcare provider. What an asset to the care team!

Given the importance of good continuous team play between patient and healthcare in diseases such as rheumatoid arthritis, it is important that researchers regularly examine how patients experience the interaction. Jennifer Viberg Johansson, Hanna Blyckert and Karin Schölin Bywall recently conducted an interview study with patients at various hospitals in Sweden. The aim was to investigate not only the patients’ experiences of the interaction with healthcare, but also their experiences of a digital self-care app, and how the app affected the communication between patient and doctor.

The patients’ perception of their interaction with healthcare varied greatly. About half felt prioritized and excellently supported by the healthcare team and half felt neglected, some even dehumanized. This may reflect how different hospitals have different resources and competencies for rheumatoid arthritis, but also unclear communication about what the patients can expect. Many patients found the self-care app both useful and fun to use, and a good support when preparing for healthcare visits. At the same time, these detailed preparations could lead to even greater disappointment when it was felt that the doctor was not listening and barely looking at the patient.

Collaborative teamwork and clear communication is identified in the study as important contributing factors to patients’ well-being and ability to manage their illness. The patients valued time for dialogue with the rheumatologist and appreciated when their personal observations of life with the disease were listened to. Because some of the interviewed patients had the negative experience that the doctor did not listen to the observations they had compiled in the app, the authors believe that the use of digital tools should be promoted by the healthcare system and there should be an agreement on how the tool should be used at meetings to plan care and support.

For more details about the patients’ experiences, read the article here: Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study.

The study emphasizes the importance of patient-centered care for individuals with rheumatoid arthritis, as well as the importance of considering patients’ psychological well-being alongside their physical health. An important point in the study could perhaps be summarized as follows: appreciate the patient as a skilled team player.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Viberg Johansson J, Blyckert H, Schölin Bywall K. Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study. BMJ Open 2023;13:e072274. doi: 10.1136/bmjopen-2023-072274

This post in Swedish

In dialogue with patients

Research nurses on ethical challenges in recruiting participants for clinical research

In clinical research with participating patients, research nurses play a central role. On a daily basis, they balance the values of care and the needs of research. For these nurses, it is clear that patients’ informed consent for research participation is more than just a one-time event completed by signing the form. The written consent is the beginning of a long relationship with the patients. The process requires effective communication throughout the course of the study, from obtaining consent to subsequent interactions with patients related to their consent. The research nurses must continuously ensure that participating patients are well informed about how the study is progressing, that they understand any changes to the set-up or to the risks and benefits. If conditions change too much, a new consent may need to be obtained.

Despite research nurses being so deeply involved in the entire consent process, there is a lack of research on this professional group’s experiences of and views on informed consent. What problems and opportunities do they experience? In an interview study, Tove Godskesen, Joar Björk and Niklas Juth studied the issue. They interviewed 14 Swedish research nurses about ethical challenges related to the consent process and how the challenges were handled.

The challenges were mainly about factors that could threaten voluntariness. Informed consent must be given voluntarily, but several factors can threaten this ethically important requirement. The nurses mentioned a number of factors, such as rushed decision-making in stressful situations, excessively detailed information to patients, doctors’ influence over patients, and disagreement within the family. An elusive threat to voluntariness is patients’ own sometimes unrealistic hopes for therapeutic benefit from research participation. Why is this elusive? Because the hopes can make the patients themselves motivated to participate. However, if the hopes are unrealistic, voluntariness can be said to be undermined even if the patients want to participate.

How do the research nurses deal with the challenges? An important measure is to give patients time in a calm environment to thoughtfully consider their participation and discuss it. This also reduces the risk of participants dropping out of the study, reasoned the nurses. Time with the patients also helps the research nurses to understand the patients’ situation, so that the recruitment does not take place hastily and perhaps on the basis of unrealistic expectations, they emphasized. The interviewees also said that they have an important role as advocates for the patients. In this role, the nurses may need time to understand and more closely examine the patients’ perspectives and reasons for potentially withdrawing from the study, and to find suitable solutions. It can also happen that patients say no to participation even though they really want to, perhaps because they are overwhelmed by all the information that made participation sound complicated. Again, the research nurses may need to give themselves and the patients time for in-depth conversations, so that patients who want to participate have the opportunity to do so. Maybe it is not as complicated as it seemed?

Read the important interview study here: Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses’ experiences.

The study also highlights another possible problem that the research nurses raised, namely the questionable exclusion of certain groups from research participation (such as people who have difficulty understanding Swedish or have reduced cognitive ability). Such exclusion can mean that patients who want to participate in research are not allowed to do so, that certain groups have less access to new treatments, and that the scientific quality of the studies is hampered.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Godskesen, T., Björk, J. & Juth, N. Challenges regarding informed consent in recruitment to clinical research: a qualitative study of clinical research nurses’ experiences. Trials 24, 801 (2023). https://doi.org/10.1186/s13063-023-07844-6

This post in Swedish

Ethics needs empirical input