Ervaren kwaliteit van de zorg door personen met autisme

Abstract

This article examines the way in which persons with autism aged 16 to 21 years old experience the care they receive. As a person with autism may experience difficulties in many areas of life, it is important to ascertain the individual special care needs of patients, together with any problems that may arise. With this goal in mind, an investigation was conducted among members of the Nederlandse Vereniging voor Autisme (NVA). This study measured patients’ experiences of care with respect to the areas of school, work, home, the diagnosis, health care, and friendships, and made use of both interviews and a questionnaire. The questionnaire was sent out to all NVA members (over 13.000), 2275 of which completed and returned it. Out of all the returned questionnaires, 15 people within the age range of the target group of this study were selected to participate in individual interviews. According to the results, the respondents valued caregivers who had a thorough knowledge of autism and tuning to patients’ individual needs. The results also indicated that the respondents needed someone to help them understand the social context. The NVA has the expertise and experience to be able to meet this need. To accomplish this, attention must be paid to two things in particular: ensuring that caregivers are trained to tuning to patients’ individual needs, and stimulating the presence of personal coaches in schools and in the workplace. Future research may draw on respondents’ suggestions for further improvement, as given in the interviews and questionnaire.