Values in the care for young persons with Prader–Willi syndrome: creating a meaningful life together

Abstract

Caregivers sometimes feel frustrated by present emphasis on self-determination in the care for individuals with an intellectual disability. They are confronted with situations in which there is a conflict between providing high quality care and respecting the client's autonomy. Such conflicts are prominent in the care for people with Prader-Willi syndrome (PWS). This condition is characterized by overeating behaviour which frequently leads to serious obesity. The central question in the present study is how persons involved, parents and professional caregivers, deal with the problems of the prevention of obesity in young individuals with PWS in everyday life. In-depth qualitative interviews were conducted with 23 parents and 14 professional caregivers of 18 persons with PWS. The interview data were analysed using the constant comparative method as described in grounded theory. On the basis of analysis of the interviews four values emerge that parents and professional caregivers indicate as relevant and directive to their acting towards the child or the client: physical health, well-being, freedom and responsibility, and a liveable life. Furthermore, caregivers mentioned several enabling and limiting conditions that influence these values. And they named several interventions they used to realize the values. Of importance is the question how to create life in such a way that it is acceptable and meaningful for everybody involved. By building up a relationship to which acceptance and trust are central, a certain amount of independence and responsibility can be promoted. By creating trust it is possible to deal with rules in a less rigid way and to look where there is room for choices.