RESUMEN
OBJECTIVES: Wearable sensors that measure movement and physiological variables are attractive for clinical evaluation of neurological diseases such as epilepsy and Parkinson's disease (PD). The aim of this study was to explore perceptions regarding the use of wearable technology in disease monitoring and management as reported by individuals with epilepsy and Parkinson's disease as well as health professionals working with these patient groups. MATERIALS AND METHODS: Six patient groups (n=25) and two groups with health professionals (n=15) participated in this qualitative, descriptive study with focus group interviews. A manifest qualitative content analysis was used. RESULTS: Four categories and nine subcategories emerged from the analysis. Participants saw possible benefits for improved treatment effect and valued this benefit more than possible inconvenience of wearing the sensors. Discrete design and simplicity were considered as facilitators for improved usability. They emphasized the importance of interactive information between patients and health professionals. However, they were concerned about unclear information and inconclusive recordings and some fears about personal integrity were at odds with the expectations on interactivity. CONCLUSIONS: Patients need to feel well informed and find an added value in using wearables. Wearables need to be user-friendly, have an attractive design, and show clinical efficacy in improving disease management. Variations in perceptions regarding integrity, benefits, and effectiveness of monitoring indicate possible conflicts of expectations among participants. The engagement of end users, patients, and health professionals, in the design and implementation process, is crucial for the development of wearable devices that enhance and facilitate neurological rehabilitation practice.
Asunto(s)
Epilepsia/rehabilitación , Enfermedad de Parkinson/rehabilitación , Dispositivos Electrónicos Vestibles , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
ACCESSIBLE SUMMARY: This paper adds a phenomenological hermeneutic perspective on meanings of caring for adult people who self-harm as disclosed in narratives of dialectical behaviour therapy (DBT)-trained professionals. This paper shows that providing DBT care for people who self-harm means embarking an unpredictable journey, sometimes lonely, but also often together with the person who self-harm and with the DBT team. This paper emphasizes professionals' benefits of the tools and structure offered by DBT; however, the text points to the importance of the genuine meeting, including confirmation, as a prerequisite to recovery. This paper suggests that further research might focus on the meanings of genuine meetings and their organizational prerequisites. ABSTRACT: In this paper, we aim to explore meanings of caring for adult people who self-harm as described in the narratives of professionals trained in dialectical behaviour therapy (DBT). We conducted narrative interviews with nine professionals working in a DBT team and used a phenomenological hermeneutical method to analyse their narratives. Our comprehensive understanding cast the caring relationship as an unpredictable journey, in which the professionals were guides or companions who aimed to walk side-by-side with the person who self-harms, prove to be trustworthy, and keep on track. They sometimes saw the journey as lonely and sometimes as a joint endeavour. Our analysis was informed by Martin Buber's writings on the 'genuine meeting' and confirmation. The professionals emphasized the importance of the tools and structure offered by DBT; however, the text points to the importance of the genuine meeting, including confirmation, as a prerequisite to recovery. Mental health nurses need opportunities for continuous training and counselling.