Care for and with people with severe disabilities. Results of a survey of residents in assisted living communities in Austria
Authors: Dorner Thomas Ernst , Kauba Andreas , Schauer Veronika 
Published: January 2024

Background: Communication barriers, along with attitudinal, physical and financial barriers are among the strongest hurdles in the comprehensive care of people with disabilities. Especially due to communication barriers and patronising attitudes, care is often designed for people with disabilities and not with them. The Integration Team of Haus der Barmherzigkeit (HABIT) in Vienna and Lower Austria offers high-quality care to people with severe and multiple disabilities and high nursing support needs. Most of the residents are dependent on a wheelchair, often communicate non-verbally only, are often affected by epileptic seizures and sometimes require enteral nutrition. For adult people HABIT runs 15 shared flats for 10 to 12 inhabitants for fully or semi-supervised living, and two residential communities for 16 children and young people. Furthermore, there are 4 basic day centres for 182 places. Additionally, HABIT offers mobile support for children, young people and young adults. It was the aim of this residents survey to systematically examine quality of life, satisfaction, and the care needs of the residents of the living communities of HABIT. 

Methods: The survey was conducted by nine trained HABIT employees. A total of 42 residents in 14 different HABIT housing units were interviewed. The survey was conducted in personal interviews with a structured questionnaire, partly with visualised answer scales.

Results: The questions most frequently answered positively were those about feeling comfortable in the place of residence, security in the shared apartment (each 86% positive answers), and whether one could do what one would like to do (81% positive answers). The questions most frequently answered negatively were (1) often being in pain (45%), (2) being often annoyed by caregivers (33%), (3) noise pollution, (4) caregivers not knocking on the door before entering, and (5) not being able to sleep at night (24% each).

Learnings and next steps: Especially the points with high dissatisfaction were discussed in an interdisciplinary team and measures against them were fixed: (1) Employees are to be sensitised to the recognition of pain. How pain is individually expressed verbally and non-verbally is now documented for each resident. (2) Anger about caregivers should be taken seriously by noticing it, reacting to it, and verbalising the feeling of the person concerned. It is now known and documented for each resident how anger and dissatisfaction manifest themselves so that this can also be recognized by each caregiver. (3) Measures against excessive volume include paying attention to whether employees are speaking too loudly, reflecting on the volume with which music is being played, checking whether loudness of a resident could be a sign of displeasure or overwhelm and represents other needs of the inhabitant, and considering soundproofing. (4) Regarding knocking, it was agreed that the resident's room would not be entered immediately after knocking, but that a few seconds would be allowed before entering the room, even if no reaction is expected. This also applies to open doors. (5) Staff will pay more attention to when residents want to go to bed and wake up.