RESUMO
Background: People with a chronic condition such as Parkinson's disease (PD) struggle with acceptance and finding meaning in life. Consciousness coaching could be a valuable addition in addressing these issues. Objective: We aim to evaluate the user experiences and potential effectiveness of consciousness coaching for people with PD (PwPD). Methods: We performed a pilot randomized controlled trial including PwPD in Hoehn & Yahr stage 1-3. People with cognitive impairments, severe psychiatric disorders, or those who did not have a clear issue to address with consciousness coaching, were excluded. PwPD were randomly allocated to either receiving 6 months of consciousness coaching in addition to usual care or to usual care alone. To explore experiences we performed semi-structured qualitative interviews with all PwPD in the intervention group. Potential effects were explored using questionnaires on quality of life, activities of daily life, self-management and non-motor symptoms at baseline and after 6 months. Results: We included 39 PwPD, 19 participants in the intervention group and 20 in the control group. Based on the interviews, we identified a number of themes and codes. In general PwPD experienced consciousness coaching as confronting but supportive in reaching their goals and in taking more responsibility for their lives. Quantitatively, we did not find a difference between groups for any of the outcomes. Conclusions: Consciousness coaching was considered valuable by most participants in this study and may be an interesting addition to PD treatment. We did not find any effects of the intervention on PD symptoms or quality of life.
RESUMO
Background: Physiotherapy for persons with Parkinson's disease (PwPD) could benefit from objective and continuous tracking of physical activity and falls in daily life. Objectives: We designed a remote monitoring system for this purpose and describe the experiences of PwPD and physiotherapists who used the system in daily clinical practice. Methods: Twenty-one PwPD (15 men) wore a sensor necklace to passively record physical activity and falls for 6 weeks. They also used a smartphone app to self-report daily activities, (near-)falls and medication intake. They discussed those data with their PD-specialized physiotherapist (n = 9) during three regular treatment sessions. User experiences and aspects to be improved were gathered through interviews with PwPD and physiotherapists, resulting in system updates. The system was evaluated in a second pilot with 25 new PwPD (17 men) and eight physiotherapists. Results: We applied thematic analysis to the interview data resulting in two main themes: usability and utility. First, the usability of the system was rated positively, with the necklace being easy to use. However, some PwPD with limited digital literacy or cognitive impairments found the app unclear. Second, the perceived utility of the system varied among PwPD. While many PwPD were motivated to increase their activity level, others were not additionally motivated because they perceived their activity level as high. Physiotherapists appreciated the objective recording of physical activity at home and used the monitoring of falls to enlarge awareness of the importance of falls for PwPD. Based on the interview data of all participants, we drafted three user profiles for PwPD regarding the benefits of remote monitoring for physiotherapy: for profile 1, a monitoring system could act as a flagging dashboard to signal the need for renewed treatment; for profile 2, a monitoring system could be a motivational tool to maintain physical activity; for profile 3, a monitoring system could passively track physical activity and falls at home. Finally, for a subgroup of PwPD the burdens of monitoring will outweigh the benefits. Conclusions: Overall, both PwPD and physiotherapists underline the potential of a remote monitoring system to support physiotherapy by targeting physical activity and (near-)falls. Our findings emphasize the importance of personalization in remote monitoring technology, as illustrated by our user profiles.