G12.2
Conditions
Interventions
Group 1: The study mainly follows a qualitative approach using semi-structured interviews. Considering the current situation in the context of the Covid-19 pandemic and the associated risks for the pr
Sponsors
Forschungsgruppe Geriatrie - Charité Universitätsmedizin Berlin
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: (a) patients with NME Inclusion criteria: - Patients from the age of 18 years - Clinical diagnosis of a NME: possible, probable or confirmed ALS according to the revised elescorial criteria or clinically confirmed diagnosis of an infantile or juvenile form of spinal muscular atrophy (type I, II and III) - already supplied with a robotic system b) (nursing) relatives Inclusion criteria: - at the age of 18 years - Persons who have a close personal relationship with the patient, come from the patient's family or extended environment and are significantly involved in the care process c) Nursing professionals Inclusion criteria: - at the age of 18 years - registered carer or care assistant - Experience with the care of people with NME
Exclusion criteria
Exclusion criteria: (a) patients with MNE - lack of ability to consent (concomitant at least moderate dementia) - unwillingness to record pseudonymised personal and disease-related data - Severe auditory, visual, sensory and motor limitations - Psychiatric disorders (e.g. depression, anxiety and compulsions; substance-related disorders in the last 2 years, schizophrenia, other psychotic disorders) - Severe affective or cognitive disorders (Are you or have you been treated for a mental illness?) - No testing of or provision of robotic assistance system(s) b) (nursing) relatives - absence of consent - Existence of a significant psychological burden which makes the additional burden of interviewing appear unreasonable from a clinical point of view c) Nursing professionals - Lack of experience with the care of ALS patients
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| What are the requirements of MNE patients and their (informal) caregivers on robotic assistive systems for maintaining autonomy and coping with everyday life? By using semi-structured interviews the following fields will be examined: - Fields of application of robotic systems to support people with MNE in everyday life - Robustness of human-robot interaction (HRI) - Perception and acceptance of the automation process of action - Cognitive and physical stress from human-robot interaction - Impact of HRI on the quality of life of both patients and (informal/professional) caregivers - Relief from robotic support In addition, moderating factors such as willingness to use technology, self-efficacy and quality of life will be assessed on the basis of validated, quantitative questionnaires. | — |
Secondary
| Measure | Time frame |
|---|---|
| Which empirical challenges exist with regard to the user group-specific requirements about ethical dimensions of participation, care, self-determination, security, privacy, justice and self-image? By using semi-structured interviews the following fields will be examined: - Identification of ethical challenges for the future routine clinical use of assistive robotics for people with neuromuscular diseases - Empirical evidence for the risk-benefit calculation with regard to the ethical assessment dimensions of participation, care, self-determination, safety, privacy, justice and self-image for the future routine use of robotic assistants for people with neuromuscular diseases. - Definition of ethical recommendations for the future routine clinical use of robotic assistants for people with neuromuscular diseases. | — |
Countries
Germany
Contacts
Public ContactCornelia Eicher
Forschungsgruppe Geriatrie - Charité Universitätsmedizin Berlin
Outcome results
None listed