Feeling controlled or being in control? Apps for self-management among older people with neurological disability

Abstract

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson's disease and stroke reason regarding using apps to facilitate self-management in everyday life. Material and methods: A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51-80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson's disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns. Results: The results formed two themes. The first theme "using apps to have control of my health" comprises two subthemes; "monitor and take responsibility for a healthy lifestyle" and "compensate to facilitate everyday life". The second theme "using the app as a tool and means for communication" also comprised two subthemes; "dare to trust the app" and "feeling safe when sharing information with health care professionals". Conclusions: The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered. ä IMPLICATIONS FOR REHABILITATION Apps can be used for self-management if they are safe and can be trusted. People with neurological disabilities want to be involved in their healthcare and needs to be addressed by health care professionals. The use of apps grasp over a wide variety of areas this is something that may be considered in health care and something that can be addressed by interdisciplinary approaches. Ordinary health-oriented apps and disease-specific apps were used differently and for different purposes.

The use of virtual complementary and integrative therapies by neurology outpatients: An exploratory analysis of two cross-sectional studies assessing the use of technology as treatment in an academic neurology department in New York City

“…Prior to the pandemic, research has shown that virtual-based CITs are potentially beneficial to patients with neurological conditions who want to improve self-care and track their symptoms. 8 , 20 Studies demonstrated that the use of virtual CITs put increased responsibility on the patient, which enabled them to feel more involved in their care and motivate them to maintain a healthy lifestyle. 8 , 20 During the pandemic, and with the associated increased use of telehealth services, 4 we found several key observations regarding CIT use: (1) patients who reported postponing medical treatment were more likely to seek CITs; (2) younger patients were more likely to employ mobile/virtual CITs; (3) virtual exercise, virtual psychotherapy, and relaxation/meditation smartphone applications were the most reported types of virtual CITs employed; (4) patients who reported postponing medical treatment were more likely to seek complementary and integrative therapies (CITs).…”

Stroke survivors’ preferences regarding study participation in rehabilitation research

“…The finding that the vast majority of the responding stroke survivors prefer to be contacted by postal letter and use paper forms to respond speaks for consciousness in this regard when using surveys with this specific population. In an international perspective, it is important to keep in mind that Sweden is among the most digitalized countries in the world [ 38 ] and increasing proportions of older people and people with disabilities use the Internet and digital technologies [ 39 ]. Our findings do not imply that stroke survivors are negative towards using new modes of communication.…”

IMPROVE 1.0: Individual Monitoring of Psoriasis Activity by Regular Online App Questionnaires and Outpatient Visits

“…Often, there is an active–passive relationship between health care professionals and patients, with patients being in a passive and inanimate role ( 17 ). Here, a smartphone app used by the patients would help to bring the patient back into the center of disease management as it was already shown for, e.g., neurological disorders ( 18 ). Regular assessment of the disease activity by the patients and easy display of disease course and disease-related factors via the app would clearly facilitate doctor–patient communication.…”