Table 4 Content of the final questionnaire
Item no. | Area of assessment | Items | Response options | Time interval |
|---|---|---|---|---|
1–4 | Living situation | Private household; nursing or residential home; special nursing facility for people with severe DOC; assisted living community; others | Yes/no | Current situation |
5–8 | Utilisation of home health care and domestic services | Home health care service; paid domestic assistant; informal care by family caregivers, friends or neighbours; other forms of inpatient care e.g. day-care centre | Yes/no, Amount in days/hours/minutes per week Starting date | 3 months |
9–11 | Social insurance benefits | Benefits of statutory long-term care insurance | Yes/no Care level Attendance allowance: € per month Hardship provision: Yes/no/unknown | Current situation |
Benefits of statutory accident insurance | Yes/no | Current situation | ||
12 | Utilisation of outpatient health care | General practitioner; internist; gynaecologist; surgeon; orthopaedist; neurologist or psychiatrist; dermatologist; ophthalmologist; urologist; dentist; psychotherapist; outpatient treatment in hospital; special outpatient clinic for people with severe DOC; others | Yes/no Number of visits | Last 3 months |
13 | Utilization of diagnostic measures | Electroencephalography (EEG) | Yes/no | Last 3 months |
14 | Utilization of adaptive technologies and medical aids | Wheelchair or multifunctional wheelchair; mobility aids e.g. hoist; standing boards; walking aids e.g. wheeled walker; bathing aids e.g. shower couch; toileting aids e.g. commode chair; hospital bed (height adjustable); positioning material e.g. bed wedges; tracheostomy equipment; suction units; ventilator; inhalation devices; feeding tube e.g. PEG-tube; feeding pump; communication devices; orthosis or splints; continence products; others | Owner: Yes/no User: Yes/no | Current situation and last 3 months |
15–27 | Utilization of therapies | Physical therapy; occupational therapy; speech and language therapy; rehabilitation nursing | Yes/no Starting date Amount in days/hours/minutes per week | Last 3 months |
Others | Yes/no; Amount in days/hours/minutes per week | Last 3 months | ||
15–27 | Experience of family support (see Table 1) | Information provision; competent consulting; instructions for therapeutic und nursing measures; inclusion in therapeutic process; physical and psychological relief; support for social participation (separately for physical therapy; occupational therapy; speech therapy; rehabilitation nursing) | Strongly agree/agree/disagree/ strongly disagree | Current situation |
28 | Multidisciplinary collaboration of health professionals | Support by a multidisciplinary team | Yes/no | Last 3 months |
29 | Collective treatment and care planning; collective documentation; joint team and case discussions; working across disciplines; collective conceptual orientation; no multidisciplinary team work | Strongly agree/agree/disagree/ strongly disagree/unknown | Current situation |