Maria Julsen Andersen completed their Master’s Thesis in media, communication and information technology with the title “Relative’s role in a care collective characterized by distance” at NTNU, Faculty of Social and Educational Sciences, for the academic spring semester 2022.
Focus for thesis
The increasing digitalization of public and private health services is a complex consequence of societal challenges related to the capacity of healthcare systems combined with an ageing population and an example of technology development. This has consequently led to more research in the area, which has set other requirements for the treatment and follow-up of patients, where the role of relatives is proving to be more critical. In connection with this, Sykehuset Østfold (SiØ) has implemented the project Innovative Patient Process from 2018–to 2021. In the project, Nimble People, an application with a user interface adapted to patients, has been tested as a home-based follow-up service for cancer patients. Nimble People ́s central function is the reporting form, where the patient registers symptoms and self-performed measurements. In the project, the application has been used by patients to report pain and side effects according to treatment and follow-up.
The following study aims to shed light on relatives’ experience of application-based follow-up and what consequences this may have for patients’ treatment. This research question under investigation stems from previous research that shows that relatives have vital roles, primarily in physical and video follow-up, which has led to the topic being put on the social agenda. In this way, relatives and various care collectives are increasingly crucial in future care.
The study was conducted in collaboration with Sykehuset Østfold. It consists of eight qualitative in-depth interviews with the next of kin associated with the Innovative Patient Process using an interview process and guide developed concerning the relative’s vulnerable situation. These were contacted using a list of patients’ relatives maintained by the Hospital. The findings have been analyzed through a domestication analysis based on Sørensens ́ (2006) and Ask and Søras ́ (2021) domestication theories incorporating practice, cognitive, symbolic, and social dimensions. These dimensions constitute the theoretical framework in the thesis and characterize the discussion of the findings.
The findings show that application-based follow-up of cancer patients via Nimble People works for the patients themselves but not for the relatives in the study, as they feel excluded. It turns out that there exist knowledge gaps because of a lack of information from the hospital to the relatives or/and the absence of information transfer in the household. Consequently, the relatives feel little involved and less confident that the patient will receive proper treatment. For relatives’ feelings to be taken care of, they want to be involved throughout the follow-up process from start to finish, where both professional-relative interactions and relative-patient interactions are essential. The relatives can contribute insight into the patients’ self-reporting through such an interaction, leading to more accurate reports. It also turns out that several of the app’s functions can be utilized to benefit the patients’ treatment if the hospital actively includes relatives regarding patients’ use of Nimble People.
Relation to future of work
Based on the health sector being digitalized where patients and next of kin are required to take more responsibility for medical treatment, we must ensure that all influencing actors associated with the digital solution are mapped. This Master’s Thesis raises several questions related to actors connected to the technology used for medical treatment over distance. Examples of questions are; should patients’ right to ownership over their own illness be emphasized, and what happens if relatives are assigned a more active user role from the start? As an extension of these questions, the healthcare system must balance the different needs of different actors in the patients’ care network. In this way, they must consider whether patients, next of kin, or healthcare personnel’s needs are most critical for digital treatment. They must also take care of all the actors’ needs at the same time.
This thesis indicates that patients’ closest relatives and their experiences with Nimble People affect the medical treatment. In that way, the needs of this user group must be considered to facilitate the best possible patient treatment through application-based follow-up in future healthcare and following studies.
There are not a lot of research contributions on how relatives experience application-based follow-up which means that more studies should be done. This will involve investigating how other follow-up applications are used, how relatives are involved in the follow-up, and what consequences it has in connection to the patient’s treatment. It would also be interesting to do research on how developers of technology such as Nimble People inscribe use through the technology’s design.
Based on the master’s thesis findings, more research on the topic will be done by two researchers at NTNU.